Fall 2013

Fall 2013

Thursday, May 31, 2012

Settled in

When I told you we were moving, I didn't quite realize how that would go - lol! After Mark arrived, I went to take a shower and came back to Maia's room to see some friends from church with armfuls of provisions for us. Our nurse was standing at the door and asked me if we were ready to go. HUH??? I hadn't even combed my hair after the shower, but apparently it was time for Maia to be off the unit. So I was literally grabbing things from the room and  throwing them on Maia's bed as they were wheeling it down the hall. Our friends were kind enough to make the trip with us and visit a little in Maia's new room as she was getting settled.

The day nurse here on the medical unit was awesome, took lots of time to explain the unit routine and how things might be different. Maia was really agitated and anxious as a result of the transfer and pretty much out of control - full blown meltdown. Carla (the nurse) asked if I wanted to crawl in bed and snuggle with Maia. This had been discouraged in the ICU because of the drains, tubing, etc. Carla told me that none of that mattered, they would work around anything that Maia had, but it was important that I be close to her. What a wonderful thing... at least for this momma. It may not have made a whole lot of difference for my girl (she still needed medication to get her settled down), but at least I was able to hold her in my arms, talk quietly - reassuring her that it was going to be ok. Eventually, she was able to relax a little bit and calm down. Docs came in and  introduced themselves shortly afterwards which was nice.

Occupational therapy came to work with Maia this afternoon (they had seen her this morning in the ICU for some exercises, too). They did a very basic swallow evaluation, trying pudding, water, and a tiny piece of graham cracker. Although she did not have a strong drive to take anything orally, the therapists both felt that she was able to control the textures and swallow without evidence of aspiration. So thankful for that. They will continue to work with her for a few meals to ensure there are no concerns, before allowing us to feed her. Such a change from my sweet girl's usual appetite. It was difficult to see her sitting in a specialized chair with little ability to hold her head up or use her arms/hands. She is such an independent, determined kiddo that I know it will come back... I just want it to happen now (yep, a little unrealistic I know).

The admissions coordinator from the rehab unit came to visit with us, ask some questions about Maia's pre-hospital function, and explain the unit routine. Maia will have PT and OT twice daily, as well as speech therapy once daily. She will dress in her own clothes and follow a "typical" daily routine. Stay is anticipated to be 2-3 weeks. Staff will help arrange any adaptive equipment we need before bringing her home.

I'm still trying to reconcile this with the "old" Maia. My heart just hurts and honestly, it feels a bit overwhelming to think about the journey ahead. I'm sure I will need to remind myself often to focus on one day at a time and not try to figure out what things are going to look like a year from now, six months from now, one month from now, or even one week from now. God knows what the future holds and I trust that He will see us through the difficult moments. While the original context is not quite the same as our circumstances, God showed me this verse from Haggai this morning and I believe He meant this in relation to Maia.
"'The glory of this present house will be greater than the glory of the former house,’ says the Lord Almighty. ‘And in this place I will grant peace, ’ declares the Lord Almighty.” - Haggai 2:9

Can I ask for your prayers specifically for Matthew? Mark and I are going to make some changes so that he has more time with us. He is loving time with Nana and Papa, but there are also some behaviors that are likely a result of our absence. Even though we try to explain in a way that he understands, Matthew still struggles to grasp why Maia is sick and can't come home as well as why we are spending so much time at the hospital.

It is my hope to make a post in response to your encouraging comments one of these days. I am sustained and uplifted by each of you and your prayers for our girl. I tell her every day how much she is loved and cherished by so many people. Thank you always seems so little, but my gratitude knows no bounds.

Moving

Maia did pretty better than I anticipated overnight. She slept pretty comfortably and only required extra pain medication once or twice (I can't remember... brain mush - lol). This morning, she's a little irritable but awake and watching Cat in the Hat which is one of her favorite shows.

She is doing well enough to leave the ICU today (YAY, although I wish I could bring some of the nurses and doctors with us). We are waiting to hear if the transfer will be to the general care pediatric unit or the rehab unit. One of the docs who was just in said it may be Monday before she would go to rehab. Please pray that they will be able to take her today, I truly think it would be so much better for Maia to begin that therapy as soon as possible. God's in control and He knows where we will move to so I have to remember to trust His plan.

I'll update once we know more, waiting for the different teams to round this morning so it will be a few hours, I'm sure.

Wednesday, May 30, 2012

Resting

Maia got back to her room around 4:15pm. She was pretty fussy initially, but has historically woke up from anesthesia very irritable so this was nothing new. Pain medication helped her sleep from 6:20 until shortly before 8pm. She was scheduled to get pain medication at 8pm and was starting to get agitated about 10 minutes before it was due. At 8:10pm, I finally put the call light on to ask where it was and one of the nurses brought it in ten minutes later - sigh!!! It is given through her NJ tube so I was concerned that we were past the point of waiting for it to be effective and that she would need IV medication. I asked the nurse to get the IV med for Maia but before she administered it, the Oxy seemed to kick in (thank goodness) and sweet girl has been sleeping for about 1 1/2 hours now. Please pray that she has a comfortable, restful night.

One of the neurosurgeon residents has checked in on her. Dr. Y (Maia's favorite neurologist) has as well. Which reminds me of a cute little aside. Before surgery, I was telling Chrissy (Maia's day nurse) that Maia just loves Dr. Y and also Dr. W (the head neurosurgeon). They are both nice looking gentleman and I said that Maia had good taste. Chrissy said to Maia, "Do you like good looking boys?" Maia got the cutest look on her face and just giggled. Total coincidence, but it was too funny!

We are anticipating just an overnight stay here in ICU. Not sure if Maia will go the general care pediatric unit or directly to the rehabilitation unit. I think it may depend on antibiotic therapy. The infectious disease doctors had said 24 hours of antibiotics post-op, but Neurosurgery says 48 hours. So will have to see what the morning brings. I don't know how long the rehab stay will be, but Mark and I both feel the intensive therapy will be beneficial in her recovery.

Again, thank you for your ongoing prayers for our sweet girl! Please keep them coming, she still has a long road ahead of her. But, Miss Maia is a fighter and I believe God has big plans for her. It will be fun to see what they are!

Oh before I forget... yes, they did honor my request and Maia is now rocking the "no hair" scene! She is just as beautiful without hair as she is with.

Finished

Surgery done now at 3:50pm, she will not go to recovery area - just straight back here to ICU. Can't wait to see my sweet girl!!

In surgery

It was about 1:20 when we finally took Maia to the pre-op area. When the orderly arrived with the cart, Maia started to get anxious. And by the time we were in preop, she was near panic. Although Mark and I smiled and tried to reassure her, it broke my heart to see the fear in her eyes. I wanted nothing more than to pick her up and bolt for the nearest exit. Even though this surgery is a step in the right direction, she doesn't understand that. So, we had to give her a kiss and I held it together until she was taken into the OR. Then, Mark had to deal with an emotional wife. ;-)
Surgery started at about 2:25pm. We're waiting to hear from the communicator now.

11:40am

Just got notice to prepare Maia for surgery. Will be heading to the pre-op area soon.

Still waiting

It's shortly after 11am and we are still waiting for the notice to prepare Maia for surgery. Our pastor was just here and prayed over Maia again which was wonderful. The surgeons came in early this morning. The shunt will be placed on the left side again (the original location from Ukraine) due to concern about bacteria/infection at the site of the external drain which is on the right. I've begged asked if the pre-op team would be willing to shave Maia's head before surgery. I'm told it is unlikely, but the request will be passed on. Sounds as if they don't feel that it is part of their job - ugh! I wish that it wasn't necessary... it's taken 18 months to get our sweet girls hair this long. But, she has three shaved spots from the previous two surgeries and will have another after today. There is just no way that we can cover that many areas up. Might as well start from scratch. And given how tangled her hair is from over two weeks on her back plus how sensitive her scalp is, to try to comb or shave her hair when Maia is awake would be extremely difficult.

The infectious disease team gave me some reassurance this morning. They said we did the right things since Maia's shunt revision in February: bringing her in for evaluation repeatedly, monitoring her infection, trying to clean her scalp wounds. I've wondered if I should have been more aggressive about the low grade fever that she has run since then. The consultant (head MD) did say that because we catheterize Maia at home, she will always have bacteria in her urine. So, assuming that a UTI is the cause of a fever is not necessarily the best thing. Although there are risks associated with tapping her shunt, it may be appropriate at times. Antibiotics will continue for 24 hours after surgery, but nothing will be needed for long term therapy.

Maia slept well last night once she finally settled down (with some Ativan). She was out from about 10:15pm until 5:45am. Not a usual night's sleep for her, but enough so that she is pretty happy this morning. Thankful for that.

Will keep you posted as we hear anything. The plan is that she will come back to the ICU for at least another day to ensure she is stable post-operatively.

Thank you for your ongoing prayers and encouragement. They mean so much to us!

Tuesday, May 29, 2012

Tuesday's happenings

We've been here two weeks. It's hard to believe. On May 14, I dropped off a care package to a RR mom who was here at SMH with her daughter. Never ever did I believe that less than 24 hours later, we would be back for our own extended stay with Maia. I understand now how time seems to blur, it feels like we've been here for maybe a week. Anyway... here's what happened today.

The big news is that Neurosurgery and Infectious Diseases have agreed that the Maia's shunt can be replaced tomorrow.  Dr. W (Maia's regular neurosurgeon who has been out of town) stopped by this morning. He said that usually they like to put the shunt in a different location after there has been an infection. He doesn't know yet if it will go in the right or left ventricle. The external drain will be removed at the same time. Antibiotics will continue for approximately 24 hours after the shunt is replaced. We anticipate being in the ICU for a day or so after the revision and then transfer to the general care unit. I think I will actually be sad about leaving behind the wonderful nurses who have cared for Maia (and us) since her admission.

Dr. S (Maia's spina bifida physician) also came by this morning. She's also an adoptive mom of a precious little girl from Russia so I feel a special connection with her. Dr. S had seen Maia at the Bikes for Everybody event the week before her seizure and knows her well. She told me that when she got notification of Maia's hospitalization, she had said "That can't be my Maia!" I lost it when she asked how things were going.

The issue that no one seems to want to talk about is Maia's cognitive and functional status. Dr. W said that from his perspective, Maia should be able to go home within a couple of days as long as she remained stable. One of the other physicians (I think maybe someone from ID, but I can't remember) again commented about Maia being nearly back to her baseline. What????????????  She is SO far from her pre-seizure self that sometimes it doesn't even feel like she's the same child. I thought about that yesterday when I was at home. Yes, she is still my sweet girl. Yes, I still love her with that deep momma's love.  But, she will not come home the Maia that left our house that morning. And I am not the same momma who left the house that day in the ambulance with Maia.

But... me aside for now, Maia is functioning much at the infant level. Her body is quite deconditioned. I held her on my lap for some music therapy this afternoon and she is not able to hold her head up by herself. Although she attempts to move her arms and legs purposefully, Maia is not able to perform any meaningful activities with them. She giggles at times and cries, but this is the extent of her communication with us. I can sense her frustration when she wants to grab something or perhaps try to speak but is unable to. It is heartbreaking to hear her cries of anxiety and stress. Although I try to comfort her, there are times when she is inconsolable. Mark and I both feel so very helpless. The occupational therapist was here this afternoon and we did get Maia up in a supported chair. She was not real thrilled with this, but did quiet down while the therapist sang to her.

I was able to hold Maia for a while this afternoon and she cuddled in close, dozing on my chest for a short time before getting cranky. I treasure those precious moments.

Dr. S is going to inquire about the possibility of inpatient rehabilitation for Maia following her surgery. We are praying this will be an option for her. Although it will require more time in the hospital, the intense therapy may provide additional benefits that she would not have going home with outpatient therapy.

So, that's today's scoop. We are maintaining. Thankful for the support of our friends and family and all of you!

Monday, May 28, 2012

Memorial Day

First let me say Happy Memorial Day and thank you to all of our service men and women! I know the day is almost over, but I still want express my appreciation for those who serve our country as well as their families and friends.

I apologize for the sporadic updates over the past few days. Since it is the weekend, there has been less activity (doctors/tests/etc) and my time has been spent keeping our sweet girl happy occupied. Today was a little tougher day for Maia. She did not sleep quite as well last night. I was able to coax a few giggles and smiles out of her this morning, but she was cranky for most of the time.

Between the tube feedings and antibiotics, Maia is having significant diarrhea. Her poor bottom is suffering and she is uncomfortable. It's gotten progressively worse over the past several days in spite of butt cream and barrier paste. Our wonderful nurse Kate has left a message asking their skin care specialist nurse to see Maia tomorrow and she did request a change to formula with fiber in an attempt to thicken up the stools. Doctors are not in favor of an anti-diarrheal at this point. I may have mentioned this yesterday... her stool cultures are negative for infection which is good.

The infectious disease doctors were a little concerned about one of Maia's blood counts this morning. It was elevated which may be related to her antibiotics. This has potential to affect her kidney function so it is being monitored closely.

No change from a neurology standpoint. I don't think surgery to replace the shunt will take place tomorrow since we have not heard anything from the surgeons today. My guess is Wednesday at the earliest. But once that is in place, Maia will be able to mobilize a little more. With the current external drain in place, she really cannot change positions (the level of her head) without the nurses present and adjusting the pressure of her drain.

I am hoping that we will see the occupational therapist tomorrow. Physical therapy will begin working with Maia a little more aggresively as well. Two weeks on her back in bed have no doubt weakened many muscles and she has likely become deconditioned. I have to keep reminding myself that this will not be a "quick" recovery.

I went home for a nap this afternoon while Mark stayed with Maia. Although it was not as hard as the last time, it still was difficult. I kept thinking about how our lives have changed over the past two weeks. It will be a different Maia that comes home from the hospital. Yes, she is still our precious daughter and that has not changed. Her fierce determination and stubborness strength are obvious. But, she will not be the same little girl who got on the bus the morning of May 15. We don't know yet if this illness will have permanent effects. I pray that there will not be. In order to be fair to Maia though, I also want to be realistic. This journey will continue to be a path of learning for all of us and we will support her in whatever way we need to.

Matthew also needs us right now. I know that there will be an adjustment for him as well when we resume our new normal. I love that sweet boy and sure miss him.

Tomorrow, we should know more of the plan for the next few days. I will update in the morning. Please pray for rest for all of us. Maia is finally asleep (10:15pm) after fighting for a couple of hours. I'm headed there as well. Mark and Matthew are home. Mark is supposed to hear from the dentist tomorrow about getting in for his root canal sooner. Although he's been on the antibiotics since Friday, he's still quite uncomfortable and today was not as good as yesterday. Thanks for lifting us up in your prayers!

Listening

This morning as I started my devotions, I asked God to help me to listen to Him better. I am often "rushing" to get through and move on to the next part of my day instead of taking time to hear what He is saying. Of course I was praying about Maia as well. One of the Bible verses that God brought me to this morning was Psalm 139:16. The second part of the verse says, "All the days ordained for me were written in your book before one of them came to be." What a reminder that even before Maia was born, God knew that these difficult days were going to be part of her (our) lives. And He is with us even in the midst of the storm.
The other verse that He brought me to was Acts 17:28. "In Him, we live and move and have our being." To me the emphasis is on "IN HIM." Not because of anything that I do, but IN HIM.

Sunday, May 27, 2012

Fighting It

She's a stubborn, determined girl that's for sure. And Miss Maia is determined to NOT go to sleep. She's been fighting it for about 3 1/2 hours. Each time the eyes close, she jerks herself awake, and begins to fuss. Escalated to out of control screaming, arched back, pushing. Got her scheduled Ativan 45 minutes early. Continued to fight sleep for another 20 minutes before finally giving in. It's hard to watch. I'm praying that she sleeps for the rest of the night.

I've had some concern about blood in Maia's stool. Tests are negative for bacterial infection, thank goodness. The specimen they sent yesterday to quantify the blood in the stool isn't back yet. I just asked the nurse about it. Apparently, the lab doesn't run that type of test on the weekend. ????? That surprises me.

Nothing new from an infectious disease standpoint. No new bacteria have shown up today, thank goodness! The neurologists are adding a different anti-seizure medication to the regimen with the goal of this being therapeutic before Maia is ready to go home. They will then discontine one of the ones that she is getting IV now. 

Physical therapy did see Maia this morning and gave us a couple of stretching exercises to work on. Since tomorrow is a holiday, she won't be seen. But on Tuesday, PT and OT will begin working with her. That's going to be so important after the past two weeks on her back.

We had lots of company today. Mark's sister Betsy and her son Gavin came to visit with Mark's parents. One of my friends also stopped in this afternoon. Amy and I have known each other since 3rd grade and I love that we have managed to reconnect over the past couple years! My parents brought Matthew back late this afternoon, tired out from all the "farm work" - lol!  We had dinner together here tonight (thank Jake and Krys for FD's!). Mark and Matthew are home and I'm going to try to get some sleep since Miss Maia is finally peaceful. 

Oh before I forget, we did have some smiles and giggles this afternoon which was fun to see. The nurses were about as excited as we were (they love are sweet girl, too!).

Sunday at SMH

Our sweet girl finally got a good night's sleep. She fought it long and hard, but slept from 9:30pm until about 6:30am. Maia definitely needed that!!  She has been a little bit calmer this morning and I attribute that to the rest.
 Nana and Papa Hansen came to see me today. I was so happy that I smiled and giggled when daddy tried to eat my fingers. (from Maia)

Saturday, May 26, 2012

Day 12

It's hard to believe that we are on the downhill stretch of week 2 here at the hospital. I understand now how days seem to just blend together when there is an extended stay. Seems like it's only been about a week. As of right now, we anticipate at least another week hanging out at SMH.

Maia had another sleepless night. She slept from about 12-1am and then from about 1:30-6am. So over the past two days, she's had maybe 8-9 hours sleep. Just will not let her guard down to fall asleep. Those beautiful eyes start to drift shut and she jerks herself awake and starts crying. It breaks my heart to hear her screaming and know that nothing I do will help and in some ways, even seems to make it worse. Don't know if any other adoptive parents have experienced this, but Maia will no longer make eye contact with Mark and I. This is another heartbreaking thing. I don't know what is going through her head, I worry about trust and faith in us and her perception that we aren't "protecting her." I wish that I could look into her eyes and comfort her. Mark and I both talk to her and try to explain things simply, but it's not the same. I was able to hold my sweet girl this morning and rock her for about 45 minutes. She did fall asleep in my arms and I am thankful for that. Wish that I had our recliner at home instead of the not so great rocker that is in Maia's room.

She started antibiotic #4 today. This is to treat the newest bacteria that has grown in her spinal fluid cultures. One difference is that this bacteria is the first one to actually grow in the culture from the ventricles of her brain. Maia will continue this until after surgery. It sounds like if things stay stable, the plan to replace her shunt remains for the middle of next week. A physical and occupational therapy consult has been requested, although I am sure they will not begin working with her until at least Tuesday since it is the holiday weekend.

We did get Maia out of her room and into a wagon for a short ride this evening. Although she didn't show much reaction, she did remain calm for the entire time so will plan to do this again tomorrow. It gives her a little change of scenery.

She continued to fight sleep this evening. Around 7pm, Maia had worked herself into a full blown screaming fit. The ICU resident wrote an order for some additional Ativan as needed which Maia received at about 7:30pm. Although she was quieter, she still would not give in to sleep. Her scheduled Oxycodone and Ativan were given and finally around 9:40pm, Maia fell asleep. I asked the nurse to cancel her scheduled midnight catheterization. If she wakes up, we'll do it but if she is sleeping - we are NOT going to interupt that! I think a decent night's sleep would do wonders for her.

I just want to say thank you to everyone for your ongoing prayers and encouragement. It's what keeps us going. I apologize that I have not responded to those of you who have emailed us directly. I do hope to accomplish that one of these days. Know that Mark and I read each one of your comments/emails. It is such a blessing to hear from you and feel your support!! On that note... I am going to try to get some sleep.

I will leave you with cute pictures. Matthew is spending the night and tomorrow with my parents. When they picked him up, they told him that he was going to have a surprise. Yes, it certainly was a surprise. Wish I could have seen the look on his face when he found out what it was! Suki is going to live with Grandmama and Grandpa Jerry, but she is Matthew's new puppy. He will learn to care for her and be able to play with her when he visits. I sure miss my boy!


Friday, May 25, 2012

Really?

We're finally back on line here at the hospital. I got the computer working again this morning, we got busy, and before I could post this afternoon, it froze up again. But... hopefully, it will stay working while I finish this post.

It's been a full day. Maia did not sleep well last night. Maybe 3 or 4 hours at the most. She alternated between agitation and just lying there with her eyes open, fighting sleep. She did not tolerate her tube feedings well (they just stayed in her stomach) so the feedings had to be stopped a couple of times during the night. Due to this, the decision was made to put a new feeding tube into her small intestine so that she would receive more nutrition because she is just not getting enough to sustain her.

The neurosurgeon came in this morning and told me that the plan was for Maia's shunt to be replaced next week, probably Wednesday as her spinal fluid cultures had continued to be negative.  He did admit that Maia is not responding from a cognitive standpoint the way he expected and he is not sure why. She did seem a little more alert this morning and appeared to be focusing on SuperWhy - her favorite tv show.

Infectious disease team came by and said that Maia would remain on antibiotics through the rest of her hospitalization, but would not need anything after she went home. I was feeling optimistic about this!

The medical doctors and neurology group have been working together to try to treat this agitation; not being sure if it's pain, anxiety, a combination of both, or something else. Maia's scheduled Oxycodone was decreased and scheduled Ativan (for anxiety was added). At this point, I think it is too early to tell if we're doing the right thing with these changes or not.

So, we went for the NJ (feeding) tube placement around noon. Even though Maia got the Ativan before the procedure, it was still uncomfortable for her. By the time we got back to her room, my sweet girl was exhausted. We had some visitors and then she did finally fall asleep and slept for about two hours. I was able to catch a short nap during that time as well.

When we woke her up to cath her (empty her bladder),  Maia was NOT a happy girl. I could not calm her down. It seemed like she was having pain so I did ask the nurse for extra pain medication which Maia got. This at least took the edge off. Although she didn't fall asleep, Maia was resting quietly while we watched Cars, her favorite movie.

Dr. B, the neurosurgeon, came back to see us and asked me if Infectious Diseases had been in to see us this evening. Nope... Well, Maia is growing another bacteria in her spinal fluid cultures. This is my "really??" This makes SIX different bacteria!! I don't even know how it is possible for this to happen. Where did she get all of this junk in her system? UGH!! Poor kiddo! Well, it is likely that Maia will need an additional antibiotic in addition to the three she is already receiving. This is also going to delay replacement of her shunt. :-(

I admit, I'm discouraged. It's so hard to see these periods of agitation and not be sure what is causing them, as well as feel helpless to do anything about them. I try to calm and comfort her, sometimes it works - sometimes not. I want to ease the suffering Maia is feeling. It hurts to see her uncomfortable. It hurts that she is not able to communicate with us and that things are so different than her baseline functional status. It hurts me to see her get weaker and think about the long road of rehabilitation that she will face. And it's hard to think about a delay in the replacement of the shunt. Although the current drain is working fine, it carries it's own risks and these increase the longer in remains in place.  I'm trying to stay positive and upbeat, but my heart is aching for my sweet girl!

My heart also aches for Matthew. Although he is not suffering (AT ALL) by being with Nana and Papa, I miss my boy. He's going to spend tomorrow and Sunday with Grandpa Jerry and Grandmama which he is looking forward to. I try to explain to him what is going on, but it still doesn't feel right. Matthew has had enough abandonment in his life, I worry about his perspective on this.

Mark has an abcessed tooth. He went to the dentist this morning and is now on antibiotics/pain killers. He is miserable and I don't say that lightly because my sweet hubby rarely lets on that something like this is bothering him. So the fact that he wanted to go to the dentist tells me how bad it is. 

Ok... so that's enough of my sadness for the evening. Maia is resting comfortably now. Praying that she is able to sleep tonight. Would you pray for that also?

And please pray for my two precious guys - Mark and Matthew.  Thank you dear friends, your prayers are what is sustaining us right now.

Lack of updates

My computer locked up last night so I apologize for no progress report. Maia had another rough night. She didn't fall asleep until 2am and is already awake (7am). Staff feel it's more agitation than pain. Either way, it hurts to see her this way. She is not tolerating her tube feedings well, they've had to stop them for high residual amounts in her stomach. Waiting for official word, but doesn't sound like any evidence of seizure activity overnight. Hopefully, I can get on my computer fixed and provide a better update soon.

Thankful Thursday

Today is thankful Thursday. Well not anymore it is 12:05am. I am thankful we have a little girl who is getting better. This will be a long road, but she is getting better.  Although she is having a hard night. We would love to have her sleep all night and be awake and happy by day. We will be happy when that happens.

PS. Melanie called me to say the laptop we have at the hospital has locked up so I needed to blog tonight.
(I am at home with Matthew tonight)

Melanie will fill you in better tomorrow.

Mark

Thursday, May 24, 2012

People ask

It's so frustrating to me. Medical personnel come in frequently and ask "How close is this to Maia's baseline?" or "What is her functional status normally like? Is this really that different?" REALLY??? It makes me want to scream.

For those of you who may not "know" or have met our sweet girl... Maia is a happy child! She wakes up cheerful, much to the dismay of her brother. She has a smile that will light up the room, an infectious giggle that can brighten the darkest day. Maia does not meet a stranger. She gives wonderful hugs. She may not be able to run as fast as Matthew, but she sure tries! She loves the trampoline, "cooking," school (especially Mrs. Sue), riding the bus, and her family.

I understand that these people have nothing to compare to, no perspective of the situation. So I usually ask if they have a moment and pull out my phone to show them the video of Maia riding her trike just a week before this happened. So that they can understand that this is not my sweet girl.



But THIS IS!!







Thursday morning update

Maia had another rough night. I slept in the sleeper room until a little after 3am, then relieved Mark so he could go home and get some sleep. Maia woke up around midnight (from yesterday's Ativan). She alternated between brief periods of rest (less than 15 minutes) and screaming. Around 3, they gave her some Morphine and she calmed down briefly. I tried to go back to sleep, but every time I laid down on the couch Maia began to yell. I finally just pulled a chair up next to her and held her hand. She still had the agitation, but it seemed to be shorter in duration. This lasted until about 7:30am.
Dr. B, the neurosurgeon, came in then. He said that Maia's agitation is not unexpected given her brain injury and surgeries, that we may just need to "live through it" because to continue giving her Ativan could prolong the symptoms. So, I kept trying to reassure Maia and comfort her. Just before 9am, she was inconsolable. The medical ICU consultant came in to see what was going on. I explained to her what Dr. B had said. She basically said, "Too bad. We are not going to have her this upset. She's getting Ativan and if that doesn't work, we will give Maia morphine." Within five minutes of getting the morphine, Maia was OUT! She has been since that time. There was one brief period where it looked like she was having pain, but just couldn't express it because of the sedation. If I see that again, I will ask for the morphine.
The neurology team came in after Maia was sleeping. Dr. N (the consultant, a.k.a head doc) looked kind of skeptical when I told her what Dr. B had said. She seemed to agree that keeping Maia comfortable and less agitated was preferable. Their team is concerned about ongoing seizures (invisible) so a 24 hour EEG monitor is being placed right now. I'm glad Maia has the Ativan in her system because this would be a miserable process otherwise.
From an infectious disease standpoint, the antibiotics are being continued. They feel that another week of therapy is warrented before the internal shunt is placed. The plan is for next Wednesday if all goes well. Because the abdominal CT scan didn't show anything abnormal, they really have no idea where Maia's infection came from. We may never know.
We are day 10 into this journey and I have to admit that there are definitely moments of discouragement. The lack of response/interaction is probably the most difficult for me. I hope that my sweet girl knows that I am here, that she has some reassurance because she is able to hear Mark's and my voice. As those of you who have followed my blog for a while know, I don't like uncertainty. Tell me what's going on, I'll have my little meltdown, and then I can get up and deal with it. But living in limbo is tough.
I miss my precious Matthew. I miss home, my bed, time with my sweet hubby. I miss our daily life. Days here in the ICU blend together and I feel a little out of sorts. Not having an end in sight is also difficult.
One of the staff commented to me this morning, "You are such a strong mom for Maia. You have been right by her side, even through all these difficult moments." Oh my goodness, my mouth dropped open. Where else would I be? God has given me the privilege of being mommy to this beautiful angel. The first year of her life was spent in a hospital alone. It will not happen now. She has a forever family and she is a cherished child. God knows the plans He has for her, plans to prosper and not harm Maia, plans for hope and a future!
I remind myself that God sees the BIG picture. My perspective is pretty limited. I have no doubt that there are things going on that are beyond my comprehension in this situation. Some people might ask why a compassionate God would allow this to happen. I don't pretend to understand why this is Maia's journey. If there was anything I could do to trade places with her, I would in an instant. I do trust that IN SPITE OF, God is with Maia. He is with our family and friends who bear this burden with us. He has placed Maia on the hearts of many prayer warriors around the world who are lifting her up to His throne. We are blessed and humbled by your petitions on Maia's behalf. God knows each day, minute, second of Maia's life. This is not a surprise to Him. He is faithful, He will sustain us.

Wednesday, May 23, 2012

The latest

Maia's head CT did not show anything concerning which is good news. She received Ativan at around 3pm and has been out like a light since then. Probably good because she did not sleep last night and I'm sure that all the screaming wiped her out. So perhaps the screaming was a combination of discomfort, lack of sleep, and frustration.

While I was gone, Dr. B (neurosurgeon) came in. He told Mark that he is optimistic that Maia will eventually recover from this horrible infection. In his words, it will likely take "months," which is hard for me to hear. I want my sweet girl to be back to her usual self NOW! Someone reminded me today that God is present even in "the wait" and I have to remember that miracles are sometimes found in the small details and every day things. Anyway... immediate plan is for the internal shunt to be replaced next Wednesday if all goes well between now and then.

We haven't had any more interaction with Maia since last night. This morning, the neurologist told me that it may be several days before we see any progress. Her body and brain need rest to heal more than anything.

I'll write a more complete update tomorrow morning, but I am going to take the rest of the evening to just rest. Mark did send me for a massage. I felt very selfish doing that, but it was good to leave the hospital for a little while. I was able to come back feeling less overwhelmed and discouraged. We are going to tag team tonight. I am going to use one of the sleeper rooms while Mark stays with Maia, then we'll swap later.

Thank you for continuing to lift our precious Maia (and our whole family) up before our heavenly Father. We are so thankful for your support and encouragement at this difficult time.

"I believe in the sun,
even when it is not shining.
I believe in love,
even when I don't feel it.
I believe in God,
even when there is silence."
-Words scratched on the walls of a cellar in Cologne, Germany
by a Jew hiding from Nazi persecution.


Melanie

Melanie has had the past few days gang up on her. She is very tired and her emotions are a mess.
I told her she should go get a massage. So she did. I hope it helps her. She has been here all but one
night when I sent her home. That was not a good idea. She felt bad that she was not here with Maia
even though I was. She is the mom and mom is the one needed when things hurt. Well I think she
is doing a fantastic job.

Mark

Rough night and morning

It's been a rough night and morning. Since the drains were removed last night, Maia has been much more uncomfortable. She was able to sleep a little between midnight and 6am, but has otherwise been consistently screaming. Pain medication has been increased with little change. Although I can't say definitely, I don't think it's anxiety or frustration. We're waiting for an urgent CT scan of the head. Thanks for your ongoing prayers.

Tuesday, May 22, 2012

Thank you Sarah B and Debbie H!!

When we first arrived in Ukraine for Maia's adoption, we had dinner with two fellow adoptive families. The Birschbaughs were adopting a little boy Elijah from an orphanage fairly close to Maia's. We were able to see Jill, her friend Debbie (not Debbie H as in the title), and meet Elijah on our way home as well. Like us, Pat and Jill went back to Ukraine to adopt their son Jonathon at about the same time we went back for Matthew. Anyway... their daughter Sarah has blessed us with a Pray for Maia button which you can share with others and place on your blog. You can find it on the upper right corner of our blog home screen. Sarah has an amazing heart for the orphan as well. Thank you Sarah for supporting us in this fight for Maia's recovery!!

The other family that we met in Kyiv that first trip was Jeff Hannon and two of his daughters. Jeff and his wife Debbie (who remained at home with their other children) adopted Matthew and Michael at that same time as Maia's adoption. They also returned to Ukraine to adopt their daughters Sydney and Sarah shortly after we adopted Matthew. Debbie has rallied prayer warriors for our precious girl and I am so blessed to call her friend! Thank you for your commitment to our girl and your faith in the Great Healer!!

It would have been amazing if all three of our families had returned to Ukraine at the same time, but God's timing is perfect and He knows when we will meet again. Anyway... I just want to say thank you to Sarah and the Birschbaugh family as well as Debbie and Jeff Hannon and their family for their support over the past week!! It has blessed us immensely.

Good and questionable news

It's 10pm now and we've pretty much been busy since early this morning. Maia had a sedated MRI this AM. She came back long enough to recover a little bit from the sedation, get some contrast dye, and head off for her abdominal CT scan.
Shortly after she came back from the CT was when she spoke those few words. Oh my goodness, I can not tell you the joy that filled my heart! It seems unlikely given how much sedation she had. But, Maia was quite alert even with that and pain medication. We quickly called family and posted here about the exciting news.
This lasted about 30 minutes, then I think she was exhausted (and probably sick of us trying to get her to talk more - lol!). The ICU resident came in to tell us that the MRI looked "overall better." He was very vague and I couldn't really get a sense of whether it was good news or bad. The CT scan results then came back normal which is reassuring on one hand. I'm thankful that they didn't find any abnormalities that would have required an additional surgery. On the other hand, it doesn't provide any insight in to where all of these bacteria have come from.
We were told that the neurosurgeon was going to come and talk to us about the MRI results. Mark and I had dinner and then he had to get home as a friend was coming over. Dr. K arrived about 9pm. He said that the results of the MRI showed no improvement in the fluid collections around Maia's brain. What?? In spite of the fact that she has drained nearly 1.5L of fluid from the space surrounding her brain, there has been no change. While this is concerning, the team is reassured by the fact that no infection has been found in the fluid cultures of these areas. Based on these two factors, the care team (neurosurgery, infectious disease, and intensive care) decided that the risks of leaving the drains in place outweighed the benefits.
So, Maia got some more pain medication and Dr. K removed 4 of the 5 drains. The EVD (extraventricular device) remains in place, but the ones lying on the surface of her brain are gone. It was so hard to try to calm Maia during this. She was in horrible pain and so anxious. To hear those gutteral cries was heart breaking. 3 of the 4 drains stopped bleeding on their own (apparently, they will close spontaneously), but the 4th kept bleeding. So, they had to give conscious sedation medication and suture that.
By the time we were finished, Maia's bed was a disaster. Because everything but the EVD drain was removed, I got to hold her while the nurses changed the bed. Talk about precious moments!! She's back in bed now. Mental status not as good, she's opening her eyes but that's about all. I'm sure that removing that tubing caused some irritation of her brain. Hopefully, this will be improved in the AM.
Today's events offer more questions than answers:
  • Where did the infection come from?
  • What do we do to prevent it from recurring?
  • Where is the fluid outside her brain coming from and will it continue to build up? If so, what risks does that pose?
  • How has this horrible infection affected Maia cognitively?
Oh I know there are more, but I am barely thinking straight to type this. I just wanted to share with you friends out there in blog land. Thank you for your ongoing prayers. They continue to sustain and uplift us. I'll post more tomorrow!

Some drains coming out

Please pray for Maia's comfort. 4 of the 5 drains coming out shortly!

WOOHOO!!!

I started a post this morning, but we've been on the go since about early this morning so I apologize for not updating. And I will make a more complete post a little later this evening, but I have to share the most important news.

Maia said four words this afternoon!!!

First, she said "mommy." After we talked for a few minutes, she said "mommy" again. I said, "I'm right here, Maia." And she said, "why?" Then, she said "Hi" to one of the nurses. When we asked her to tell the doctor "hi," she said "No." 

God is good and He answers prayers!! I will give you the full update soon, we're waiting for the neurosurgeon to give us the results of today's MRI.

Monday, May 21, 2012

My sweet daughter

A little over two years ago, I received an email from a website called Rainbow Kids. They help waiting children find their forever families. I had received emails from them before and I have received emails from them since that time. But, this one was different. A little girl named Anastasia was in need of a mommy and daddy. I looked at her information and thought that maybe we could handle her special needs. I told Mark about Anastasia and he said "find out more."
On May 21, 2010 (yes - two years ago today!), I contacted the agency that had listed the little girl and filled out the required application. We received this picture a few days later.


If you had told me then that on Christmas Day (just seven months later), that I would be walking out of an orphanage in Ukraine with that same sweet little girl, I would have said, "Hmmm... not so sure about that." But there we were.

If you had told me that we would return to Ukraine a second time, I would said "not likely." Six months later, we were headed back to bring Matthew home. The five weeks that we spent together in Ukraine as a family was such wonderful bonding time for all of us. Maia and I came home with a new closeness to our relationship.


If you had told me that I would grow to love this sweet child more and more each day, I would have said, "Impossible." And yet, she steals my heart and touches my soul with every breath I take.

If you had told me that less than a month after this picture was taken, that we would be finishing our first week in the ICU with my sweet girl fighting for her life, I would have said, "You are mistaken my daughter's way too healthy!"


 
And still... here we are. I have not been able to hold Maia since last Wednesday and I would give anything to wrap my arms around her and never let go. Pat - you mentioned grabbing her and running. Yep, that's pretty accurate!! She's in the right place, but doesn't mean that I wouldn't just like to pick her up and go! It is such a horrible, helpless feeling to watch your child suffer. I would rip my beating heart out of my chest with my own hands if it would make things easier for my girl.  Please don't cease your prayers for her. I know that we are now getting to be "old news," but Maia needs us to plead for her healing just as much today as she did when she was the hot topic - perhaps even more! Tomorrow, she will have an MRI and abdominal CT. Hoping/praying for answers.

Another seizure

It lasted 5 minutes and was similar to the one last Tuesday. Stopped with IV Ativan. Please keep praying for our sweet girl!!!

Morning update and a few thoughts

One step forward, one step back... within a few minutes of posting last night,  Maia had an episode of extreme pain. It seemed like FOREVER waiting for the nurse to get her medication. The neurosurgeon came in around 11pm to say that the infectious disease people didn't think it was necessary to continue the antibiotic irrigations of her brain. They feel the IV antibiotics are providing the appropriate coverage. He said that at this point, they are just happy that Maia has not "deteriorated." UGH, that doesn't sound optimistic.

She had a pretty good night. Shortly after waking up this morning, Maia had more pain. Initially, I was able to calm her down by just stroking her face and talking to her. But after a couple of episodes, I asked for more IV pain medication so that we could stay on top of it. She is resting comfortably at the moment. Right now, we're waiting for the docs to round. Not sure what plan for today is.

And now for my musings...

Every morning, I spend a little time with God. Read a devotion and Bible verses, pray, etc. Earlier this year, I went through a period of about two months where my devotions were continuously talking about trials, difficulties, trusting in God. Honestly, I read them and wondered what He was trying to tell me. I remember thinking "This really doesn't apply to me right now, God. There aren't any major difficulties in our lives, we're doing pretty well. Why are you speaking to me in this way?"

Of course, now it makes perfect sense. God was preparing me for this time in our lives. He was trying to tell me that rough patch was ahead. It reinforces for me that nothing happens that our heavenly Father isn't aware of, that Maia's illness is NOT a surprise to Him. God is in control and although I don't understand, what I am required to do is to lean on Him. This morning, my devotional was talking about what God asks of us in difficult times. We are to focus on Him, not the problem. If we focus on the problem, we become overwhelmed and full of fear. If we focus on God, He can fill us with His peace and assurances. He can remind us that He is with us even in the midst of this pain and uncertainty. He is faithful and He is the giver of life. He loves our sweet girl even more than I do (which is difficult to imagine - lol) and He cradles her tenderly in His arms when I can't.

Sunday, May 20, 2012

Quiet afternoon and a response!!

We've had a few visitors today which has been nice. My first in-laws came late this morning. Mark's parents brought Matthew up this afternoon. Our pastor stopped by to pray for Maia and then on of Mark's friends and his son were here.

Maia was quite alert late this morning and early afternoon. Not interactive, but alert. The infectious disease doctors said that the first set of fluid collection obtained in surgery on Thursday has not grown any bacteria. They are supposed to be collecting a second set today from the drains. If there are  no signs of bacteria coming from these drains (they are the ones that are laying on the surface of her brain), the doctors will discuss if it is worthwhile to continue the irrigations or not.

After the period of alertness, she was exhausted and slept for a few hours. By then, Mark was back and we had dinner (thanks to my dear friend Starla!). Other friends stopped by for a little while and Jeanne was teasing Maia. There seemed to be a little response at that time.

Then before Mark got ready to leave (he couldn't convince me to go home two nights in a row), he was saying good-bye to Maia, tickling her, and pretending to bite her fingers. We actually got a GIGGLE from our sweet girl. I tried to post it on FB, but it just didn't work. That was the most precious sound I have heard today!! Praising God for this miracle. I know we've got a LONG way to go, but I'll take it!!! Thank you, thank you for your ongoing prayers for our priceless Ukrainian princess!!

Sunday morning

Sorry I have not updated as frequently as I have wanted to over the past 18 hours.

Mark convinced me to home with Matthew last night. Leaving the hospital was hard, but walking in the house was even harder. Maia's shoes were at the top of the stairs and our bedroom was still a mess from the ambulance crew coming in. I did not deal well. Finally took sleep medication which did help me sleep for about six hours.
This morning, I arrived at the hospital to find Maia screaming in pain. They have had to increase her medication so that she is now getting something every two hours scheduled. I'm very concerned about this... not that she is getting narcotics, but what is the reason for the increase in pain over the past 24 hours. She still is not responsive, although she opens her eyes. I can't quite tell if she sees us or if this is just a reflex.
About 30 minutes ago, she vomited. So her tube feedings are on hold. Waiting for the doctors to come in.
Please continue to storm heaven for our sweet angel. I'm feeling so anguished right now. I know that God is holding Maia and his angels are with her in ways we can't even comprehend. I also know that your prayers are sustaining all of us in this fight for Maia's life. Thank you is so inadequate, but it's all I have right now.

Saturday, May 19, 2012

Hanging in there

Maia's had kind of a rough day. On the positive side, the doctors feel that she is "looking a little better than yesterday." On the discouraging side, they told us that was the only good news they were able to give and that she is an extremely sick little girl.
It seems so hard to reconcile the unresponsive babe lying in the hospital bed with my sweet Maia who was running and playing on Monday evening. The physical shell is the same, but that's all. My heart is breaking for my precious girl.

The drains are working well. They have pulled a tremendous amount of fluid from Maia's brain. Probably around 700ml total, just from the area surrounding her brain. Can you imagine the pressure that must have been causing? The purulent material (pus) that the doctors were expecting has started to show up. It's not pretty.

The nurse today has been a great advocate for Maia's pain control. She has supported my concerns to the physicians and we now have scheduled Tylenol with Oxycodone and Fentanyl as needed. It is keeping Maia more comfortable.

Maia seems less responsive this afternoon. This may be related to the pain meds and I hope this is the case. But, it is also concerning. She's having some movements that we are trying to sort out: rigors vs seizures.

Maia has not had anything to eat since Monday evening and has lost a significant amount of weight. Thank God that she had a little reserve to work with! Feeding through her NG (nasogastric tube) were just started about 30 minutes ago at a very low rate. If she tolerates them, they will be titrated up.

This is going to be a very, long journey for our girl. Assuming that things go well, we are told to anticipate at least six weeks in the hospital. I haven't even begun to think about how to manage this. And how do we help Matthew understand. I feel such a need to just be with Maia. It's not that I don't trust others with her. It's that I WANT to be with her, to be close to her. I'm her mom, the one who is supposed to kiss all the boo-boos away. I know how to comfort her, soothe her, how to position her, etc. She is holding tightly to my left hand as I type this with my right. I can't bear the thought of leaving her. And yet, what about Matthew? He's got to be wondering why things are so different. I worry about the attachment issue. Although nana and papa are awesome, he needs to know that Mark and I are still mommy and daddy. That this will not be forever. I don't quite know how to accomplish that.

Again, thank you for your prayers and encouragement. I don't pretend to understand why this is the journey God has chosen for us and for Maia, but I trust that He is with us each step of the way. He is faithful. And He is mighty to save.

Morning Update

We made it through the night. Maia started getting miserable around midnight. Only Tylenol was ordered for pain, so the nurse got IV pain medication orders. That has helped to some extent, but sweet girl is still a little restless and uncomfortable. She's opening her eyes, but does not appear to be tracking or taking in her environment. I remember that from her shunt revision surgery in February, but it didn't last this long. However, the situation is a lot more serious now, too. Waiting for the doctors to come in this morning. Thankfully, there have been no seizures overnight. I was able to get a few hours of sleep which was good. I'll update as soon as I know more.

Friday, May 18, 2012

Quick update

Thank you for your ongoing prayers for our sweet girl and our family as well. Maia had seizures off and on for about four hours this afternoon/evening. The doctors had already added a new medication this morning after the overnight EEG showed subclinical seizures. So with this afternoon's seizures, Maia got an additional dose of the new med. Over several hours, the seizures slowed, shortened, and tapered off.
As of now, she is opening her eyes and starting to track a little. She is much more uncomfortable following today's surgery and we are trying to keep pain meds on a regular basis. The surgeon met with me tonight and does feel that in spite of the new seizures, Maia is better now than last night. So, that is positive.
Immediate plan is to begin the antibiotic flushes into her brain tomorrow. Please pray that this is effective. From what I understand, Miss Maia is writing the book on the treatment of this type of condition in a child. When Mark asked the neurosurgeon about it, we were told that there is no research or even information about how to treat an infection like hers. It's a little bit scary to think about that.  Not that I care... all that matters is that the infection clears and Maia improves. There is so much more to post, but I am beyond exhausted so I am going to try to get a little sleep while Maia is quiet. Pray that she will have a restful night.
Since tomorrow is Saturday, things should be MUCH quieter. I will try to post a little more detail. Mark and I need to spend some time with Matthew as well. Poor kiddo, he's got to wonder what's going on - even if he doesn't mind hanging out with nana and papa.

Don't stop praying

Maia has started seizing again.

Surgery is done!!!

I was just about to post that we had received notice the surgeons were closing when Dr. Hoover walked in to update us. He was very pleased with how surgery went! He had expected to find frank pus when they went in, but instead found yellow fluid (not sure what it was yet). Four in/out drains with antibiotic properties in the catheters were inserted. Maia's brain itself looked "not angry, but bouncy like it should." It is likely that antibiotic fluid will be used to flush the infected pockets several times/day over the next however many days. She is still intubated and at a CT scan to clearly identify where the drains are, but will hopefully be able to be extubated later today.
Oh, I just praise God and lift up all of you amazing prayer warriors who were storming heaven's gates for our beautiful girl!!
I will write more soon, but for now I just need to spend a few minutes in joy and praise with my hubby. Thank you, thank you, thank you!!!

9:35am

Surgery's started. We should get updates every hour or 90 minutes.

9:25am

Just checked with the nurse. No "official" start time yet, but he knows breathing tube is in. Lift up our precious girl if you would!
Heading to preop area now.

Thankful Thursday

I just realized that today is Thursday and I have not done my gratitude post yet, so here goes.
  • First and foremost, I am thankful for the most precious angel who is lying in bed, resting quietly at the moment. Maia has brought such joy to our lives and the lives of those who know her. Her infectious giggle, sweet smile, and eskimo kisses are priceless!
  • I am beyond thankful that God chose me to be mommy to this treasure (as well as the other adorable treasure in our family).
  • The doctors and nurses who have cared for Maia have been amazing. Their professionalism, dedication, compassion, support, and encouragement are such a blessing to us.
  • Those of you who are reading this and lifting Miss Maia and our family up in prayer. I have such peace right now and I know that your prayers are a huge part of that.
  • My heavenly Father whose will is perfect and whose peace and grace are sufficient even in times like this.
What are you thankful for today?

Thursday, May 17, 2012

Storm the gates of heaven for our little girl

Oh my friends, we need your prayers and we need them desperately for our sweet Maia. The MRI of her brain showed 3 pockets of a horrible infection. Two pockets are located on one side and one pocket on the other. The "best option for treatment" is to drill four burr holes (one each side, front and back). A catheter will be threaded through these to irrigate the pockets and hopefully, clear the infection.

If this is unsuccesful, Maia will likely undergo two craniotomies (at separate times). They will open up one side of her skull, clean out the infection, leave the bone out for a period of time to ensure no further concerns before replacing. After a period of "recovery," the procedure would be repeated on the opposite side.

There is no doubt in my mind that God has great plans for our Miss Maia and the devil is doing everything in his minute power to thwart that. But we serve a loving heavenly Father who has held Maia in His arms since birth. He will be holding her even when we can't.

Surgery will be tomorrow morning. The surgeons want to ensure they have all the right people in that OR and that they are thoughtful about how they will proceed instead of rushing her to surgery tonight. That definitely makes sense.

After receiving this difficult news, God truly blessed us tonight. I was able to hold my precious girl for a little while. She has also had some awake periods. She said "mommy" and has giggled as we teased her with her funny nicknames. What a gift! Having those priceless moments to hold on to as we send Maia for surgery gives me peace.

Thank you to all who have been praying for us. We are being carried by your prayers and love. God is good ALL THE TIME and HE reigns. There is NO other!

I will add one other prayer request for Matthew specifically. This is going to be a challenging time, trying to keep things as "normal" as possible for him while still being here for Maia. If any of you reading have faced this type of situation with your adopted kiddos (because of the attachment issues), I would love to hear any advice you can offer.

I will try to update as I am able tomorrow.

Update

So sorry for the delay in updating. It's been another long day. Maia had an MRI this morning. Then, an NG tube was placed so that some of her medications which are not available in IV form can be administered. This will also be used for nutrition. 24 hour EEG (monitoring of her brain activity)was started this afternoon. It has already confirmed ongoing seizures so anti-seizure medications have been increased.
The neurologist was just in and reviewed the MRI with me. There are pockets of fluid in Maia's brain, not sure exactly what they are except that they are not blood - could be infection or protein or ??? Waiting for neurosurgery to decide course of action. They may need to be drained as they are contributing to seizures and mental status.
Her spinal fluid is growing two bacteria. One is E. Coli which is found in stool (feces) and the other is enterococcus which is the same as the bacteria causing Maia's recent urinary tract infection. The million dollar question... how did these get into her spinal fluid?
Maia did say "daddy" this afternoon to Mark and she also clearly said "no" when he asked if she wanted him to sing to her.  Other than that, she has not been very responsive except to be irritable with interaction.  It was good to know that our girl is still there. I'll post more soon, I promise. Just need a chance to process all this.
Matthew's end of the year school celebration was this afternoon so Nana and I attended this. Special day for our little guy in the midst of this difficult time.
Mark and I cannot thank you enough for your prayers. They uplift us and help us to keep going. God will sustain us.

Night time thoughts

It's 4:16am and I've been up with Maia for about an hour. She's had brief periods of restlessness and periods of sleep. There have been some movements that the nurse and I are both concerned may be seizures. Nothing like the generalized tonic-clonic one that brought us to the ED, but they don't seem to be purposeful motion. She has rubbed her nose a few times, too. But, that remains all the response we've seen so far.

On Tuesday when we were in the emergency room, I heard God's voice very clearly saying, "I've chosen a different path for Maia." Now what that means, I have no idea. But, it did remind me that He is the one in control. Not me. And I trust His goodness, His mercy, His compassion.

The evil one does everything that he can to steal our happiness and joy. And he would like nothing more than to see me paralyzed in fear right now. I admit that it's hard not to give in to that. My heart is breaking for my sweet girl.

So in the midst of this uncertainty, there are truths that I choose to claim.

  • By His wounds, you have been healed. 1 Peter 2:24
  • For I am the LORD who heals you. Exodus 15:26
  • For He has torn, but He will heal us. He has stricken, but He will bind up. After two days He will revive us; On the third day He will raise us up, That we may live in His sight. Hosea 6:1-3
  • For God has not given us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7
  • There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth is not made perfect in love. 1 John 4:18
  • Do you not know? Have you not heard? The Everlasting God, the LORD, the Creator of the ends of the earth does not become weary or tired. His understanding is inscrutable. He gives strength to the weary, and to him who lacks might He increases powerThough youths grow weary and tired, and vigorous young men stumble badly, yet those who wait for the LORD will gain new strength ; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.  Isaiah 40:28-30
  • Jesus Christ is the same yesterday and today and forever. Hebrews 13:8 

Wednesday, May 16, 2012

Update

It's been a long day. Maia has still not awakened. So many doctors in and out. ICU specialist, neurology, neurosurgery, infectious disease, dermatology, etc. We were told this morning that we should start noticing gradual improvment beginning today and over the next 24-48 hours, although there has been no change so far.
They are narrowing down the bacteria in her spinal fluid and will adjust the antibiotic accordingly. Because Maia's veins are so poor, it has been impossible to draw any blood. Watching the team attempt to stick my sweet girl has been incredibly difficult. She does respond to painful stimulus and the IV sticks definitely are painful. One of Maia's nurses, Kate, talked to me about asking for a PICC (peripherally inserted long term catheter) and I said ABSOLUTELY. The physicians agreed and Maia got this placed late this afternoon.
It's about 8:30pm and we are waiting for an ultrasound of the abdomen. The infectious disease docs want to make sure that there are no abcesses in her belly that might be the cause of the infection. Maia has not been as responsive this evening as earlier in the afternoon. I guess that sounds strange given that I said she hadn't awakened. Earlier today, she was having periods of restlessness and moaning. This evening, she really hasn't had much. I decided to come her hair because it was in huge knots. Maia HATES having her hair combed so I figured if anything would wake her up, this would be it. She did act like she was not enjoying what I was doing so I know that our sweet girl was aware even if she couldn't respond.
On the positive side, Maia's vital signs (blood pressure, pulse, temperature, etc) have been stable. She has not required any oxygen since last night. Urine output has been normal. We don't know how her white blood count is because of not being able to draw any blood.  I'm not sure if the lab people will come back tonight now that we have the PICC line in or if they will wait until tomorrow.
Mark brought Matthew up for a little while this evening. He was curious about why Maia was sleeping, but otherwise pretty happy to play with the gift bag that the child life specialist had  made for him. It's hard... I feel torn between wanting to keep his routine normal and wanting to be here with Maia. Matthew stayed with Nana and Papa last night and today. He and Mark went home tonight. Tomorrow is his pre-school "graduation" so Mark will stay with Maia while I go to that.
Thank you to all who have been praying for our girl. We have felt your prayers holding us up. Please continue to pray that Maia will wake up soon. God knows the exact minute that this will happen. He knew yesterday's events, He knows today's events, and He knows every detail of Maia's future. He is faithful and His will is perfect.  "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28 
God has a purpose for Maia's life and His strength is made perfect in our weaknesses.

Maia update

So... we've had a long day, but I can finally fill in a few more details and update you on Maia. This morning, she just was not quite herself, but wanted to go to school so off she went on "Bus 5 (she LOVES her bus). I had sent a note letting the teacher know that we were concerned and to call us if there were any issues. About 10 minutes after school started, Maia threw up. Mark went to get her and I put her in our bed after she got home. She fell asleep about 9:30am. At about 11:25am, Mark went in to check on Maia and she was awake. He went back about five minutes later and saw that she had vomited, so came out to the kitchen to get a basin. By the time Mark got back to the bedroom (1-2 minutes), she had started to have a seizure.

We called 911 and headed off to the emergency room with Maia still seizing. She continued to seize after we arrived at the ED and they gave her a number of medications before the seizure finally stopped (45 minutes total). Head CT showed no sign of problems with Maia's shunt, but her white blood count (which shows how the body is fighting infection) was extremely high. We then got transferred to the ICU. Neurology decided to take a sample of fluid from her shunt and this showed two different types of bacteria growing. Because of this, it was necessary to remove Maia's shunt and place an external shunt. Surgery is done and we are finally back in her room (it's about 11:30pm). She will have the external shunt for approximately one week while she receives IV antibiotics to clear the infection. During this time, Maia will remain in the ICU and be monitored closely. After blood tests show the infection has cleared, the permanent shunt will be replaced.

My biggest concern at this point is that Maia has not been responsive since she began seizing. She did receive some substantial doses of medications to stop the seizure which certainly might contribute. Now, she also has the anesthesia in her system, too. We're praying that by tomorrow morning, Maia begins to wake up. With as long as her seizure lasted, there is concern for injury to her brain.

So, that's where things are at. Thank you to all who have been praying. I know that God is holding her in the palm of His hand. Maia was His child long before she was mine and I trust that He knows what every second of every day of her life looks like. This is not a surprise to God and He is the Great Healer. I'll try to update often.

Tuesday, May 15, 2012

Urgent prayers for Maia

Please pray for Miss Maia. we are in the pediatric ICU after she had a prlonged seizure (40 min). Not sure of cause. Head CT normal, looking for infection or other cause.

Sunday, May 13, 2012

Never a dull moment

Not even on Mother's Day.  We've had a full weekend!!  Saturday morning, Maia and I went to order a new set of glasses for her. Sweet thing is going to have bifocals. When Mark told me, I said "Seriously??? How does a four year old manage bifocals?" But apparently, they do. It's not for her vision, but to help with her alignment. Should have them in a week or so. I'll post pics of Miss Maia in her new glasses when they arrive.

My parents watched the kids yesterday afternoon so Mark and I could have a little time by ourselves. We'd hoped to go four-wheeling, but just ran out of time trying to get everything ready to go. Instead, we went for a drive. It was so nice to have just a little quiet, be able to carry on a conversation without interuption, and enjoy each other's company. Thanks mom and dad. The kids had a blast! After a couple of hours, we came back and then went out for dinner with my parents. Friday was my mom's birthday and yesterday was Mark's birthday.

Today, we headed for Wisconsin to the annual Mother's Day get together with my mother-in-law's family. It's been about 7 months since we saw the cousins, aunts, and uncles. Matthew and Maia had a great time playing with cousins their age and a friendly puppy.

By the time we stopped at my parents' house to drop off some trees, the kids were completely exhausted and quite crabby. Thought they would fall asleep on the way home, but nope... About 30 minutes from our house,  Matthew started yelling and crying about pain in his right ear. Mark stopped long at the house long enough to drop Maia and I off and for us to look in Matthew's ear to make sure he hadn't got something stuck in it. They are at the Emergency Dept right now. Right ear significantly impacted with wax. They need to get that cleaned out so they can see the eardrum, etc. Nose, throat, other ear show signs of infection. I'm guessing antibiotics are in order.

Bed's in order for me. Hope you all had a wonderful Mother's Day!!

Oh... I almost forgot to share a sweet moment. I wish that I had caught this with my camera, but I didn't get one picture this weekend. Brought my camera today and was so busy visiting I forgot to get it out. UGH!

Anyway, we stopped to see Mark's grandma this afternoon. She's 100 years old and we are so blessed to still have her with us. The kids had been wild at the nursing home. I think they were so tired that they were running around in an attempt to stay awake. We were getting ready to say good-bye and I asked Matthew to give grandma a hug. Now, Matthew is not known for his gentle nature. He is a rough and tumble kid. ;-) But, he walked quietly up to his great-grandma and gave her the softest, most gentle hug that you can imagine. It brought tears to my eyes. Hopefully, we will have the chance to visit her again soon and I can try to remember to have the camera out next time.

Ok, now I'm off to bed.

Thursday, May 10, 2012

Thankful Thursday

I was hoping to get the post done this morning, but had computer issues (sigh). Can't let the day end without sharing what I am thankful for.
  • In my last post, I shared about the trike for Maia. As soon as I got done, I started looking for information and prices on-line. I was shocked and completely discouraged. The base models which did not include options which we really wanted for Maia started out at $1100. For as much as I wanted her to have this trike, I knew there was NO way that we could afford that. Truly... how do other families afford these items for their children?? We had already been told that insurance wouldn't cover any of the cost. I was in tears. Mark suggested that we check out Craig*list.  I prayed that God would help us find a trike at the price Mark and I felt we could manage and if He could make it purple, that would be great! There were two trikes listed. One in Rochester and the other in Minneapolis. The closest one looked pretty beat up. It was still $450. The one in the cities was more expensive ($850), but it was purple (Maia's favorite color!) and looked similar to the one she had tried out.  I sent off inquiries. The next morning, I had responses saying they were both still available. Mark was already heading for Minneapolis to do something else so I contacted the seller to see if he could look at it while there. We got it coordinated and off went daddy and Maia. I called Mark about 30 minutes after he arrived at the seller's place and he told me that the trike was Maia's (at the price we agreed upon)! It is the exact trike that she had tested (just an older model). So, we've been going for a bike ride every evening after work. Watching Miss Maia ride her bike is beautiful! She is so excited and the sense of accomplishment is evident in her face. Unfortunately, my video won't upload to FB (too big of file) so I will have to get some pics or a smaller video file to share with you soon!  God answered prayers and blessed our sweet girl with a trike just for her!
  • Tonight, we had a picnic with Maia's classmates and teachers. I am very thankful for the ECSE program that Maia has participated in this year. She has made such progress and I attribute much of that to the amazing staff that work with her. Maia loves school and her teachers, what a blessing that is!
  • The changes that a year can bring. I glanced back at my blog post from last year. At that time, I was still sitting outside Maia's room while she fell asleep every night. Now, we read a book and prayer story, say prayers and give good-night kisses. She stays in bed and falls asleep. I'm very thankful for that!!
  • And in keeping with the changes a year can bring... a year ago at this time, we were waiting for our dossier to be submitted, eager to get back to Ukraine and our son. Now, he's home - learning what it's like to be part of a family, soaking in the love and attention, growing and adjusting to this new world. I'm thankful that God made that possible!
Anyone want to share what you are thankful for this Thursday??

Monday, May 7, 2012

The Last Few Days

They've been busy ones around here, but so fun as well. I took the day off on Friday, planning to brave the 100 mile garage sale that is an annual event near here. Yep, 100+ miles of rummage sales. There are people who take trailers to haul all of their found treasure!
Instead, I started Friday morning off with a meeting at the school. It was time for review of Maia's IEP and discuss plans for next year. She will be attending pre-school five days/week, 3 days in a typical classroom and 2 days in Early Childhood Special Ed. Maia has made such great progress this year and I am so appreciative of the wonderful teachers she has had!
Matthew completed his testing for ECSE services and will qualify as well. He will attend pre-school five days/week, 3 days in a typical classroom - 2 days in ECSE also. It's a mixed blessing. I want him to get the assistance he needs, but wish he didn't need it in the first place.
Anyway, Maia will attend in the morning and Matthew in the afternoon. We had hoped that they would both be able to attend at the same time so that Mark could get a little reprieve. However, that would have meant that they would be in the same classroom two days a week which would not be a good situation. They are SUCH opposites in their personalities and needs. Plus, there is such competition between the two of them for attention and "things" that we really want to avoid them sharing a class.
So... after the meeting, Matthew and I headed off to garage sale here in town. We had some good mom/son time before meeting Mark and Maia for lunch. Then, Mark took the kids so I could have a couple of hours to shop by myself.
On Saturday, we headed to the cabin for the day. It was our first time this spring and I am always a little apprehensive about how we will find things. There were a few small trees down across the driveway, but that was about it. No mice had built nests in the bed, thank goodness. We got a little clean-up accomplished before heading home late in the afternoon.
Yesterday, went to church and enjoyed some family time in the afternoon. Matthew had his spring school program in the evening. Watching him in the front of the church singing brought me to tears. Thankful to God for allowing us to bring Matthew home and for saving him from a life of mere existence! Love that sweet boy!
This evening brought a second round of tears. The nearby big city Adaptive Park and Rec Dept sponsored an event called "Bikes for Everyone" which showcased adaptive bikes for people with special needs. Matthew does fine riding a regular bike, but Maia just doesn't have the lower extremity strength to pedal the wheels of even a tricycle. However, they had a perfect trike for her! Watching her face and the sense of accomplishment as she pedaled around was beyond precious. We have requested information about the trike and are praying that it will be something we can afford to provide for Maia (trying not to get my hopes up as it is made in Scotland and the gal I spoke to said that she would give me a quote with the options we really want, but that she could take them off if it necessary). I took a video on my phone which shows my beautiful girl riding, but I don't have video capability on the blog. Here's a cute picture, though. Sorry for the poor quality. Yes, the blur in the background is Matthew - lol! He had a blast testing out some of the bikes, too. For those of you who are friends with me on FB, I will try to get the video uploaded there tomorrow.  And that's what we've been up to the past few days.

Friday, May 4, 2012

The heartbreak of bullying

A seventh grader in our community committed suicide last weekend. Why? Bullying. Even typing the word is ugly. Although we didn't know the girl or her family, I still feel a strong sense of heartbreak.  I look at my children and the mama bear in me comes out.
I "get" that kids can be cruel. That teasing and being picked on happens. I'm not saying it's right, just acknowledging. But, actions and behavior that are so horrific as to drive a beautiful young woman with her whole life ahead of her to feel that this is the only way to escape?? What happens that kids think that it's ok to cause such pain to others? My information is not from the source, but I've been told that her food was spit in, that even away from school, she had no relief because the bullies were texting her, talking about her on social media. Her parents thought that the issue had been addressed and was under control.
It makes me literally sick to my stomach. As a parent to two children who will likely always be perceived as "different," I am concerned for them. This girl who felt like she had no other options wasn't different. She was smart, active in sports, not socially disadvantaged. Looking at her picture, she was very pretty. If those things weren't enough to "protect" her from bullying, how do I keep my children safe? Mark and I have agreed that we need to make sure that our kids feel comfortable telling us (or someone) if this is happening to them (or anyone they know). Just as important will be teaching them the value of life in any form and that bullying another is unacceptable. I'm thankful that they are young enough and sheltered enough to not be exposed to this type of behavior yet. But, the time will likely come.
In the meantime, I share the shock, anger, sadness of many others about the senseless tragedy.  Although I can not imagine what they are feeling, I look at my children and know that to lose one of them in this way would be heartbreaking beyond words.  My prayers go out to the friends and family. May God meet them in those darkest moments and provide them with peace which passes understanding.

Thursday, May 3, 2012

Thankful Thursday

The weeks tend to go by so quickly these days. It's Thursday again and I better get busy because the day is almost over and I haven't shared my list yet.
  • Time with Mark - that is what I was going to blog about on Tuesday when Adeye's blog grabbed my attention instead. When Mark and I began to talk about having kids, I told him how important it was to me that we continued to make our marriage a priority. I didn't see how it could be that difficult. I know... silly, naive thing I was - lol! Since Maia came home, Mark and I really have not taken much time to ourselves. We took a night off last fall, but stayed late visiting with his mom and dad, then came home, slept for about 8 hours and went to pick up the kids. Yep, seriously. Otherwise, we've had a few hours here and there but really not much. Each year for Christmas, Mark buys me a gift certificate to a bed and breakfast. So last weekend, his parents generously agreed to watch the kiddos while we got away for the night. Oh my goodness, it was heavenly!! To spend some uninterrupted time with my hubby was a true gift. We had stayed at this B&B before and I always feel pampered. On Tuesday (my day off), I was thinking about how much I had enjoyed our time together and that I have missed that. My friend Del texted and asked if she could spend a couple of hours with the kids and give us a break. I called Mark to see what he thought and was surprised when he verbalized the exact same thing I was thinking. That the weekend getaway had really made him crave more couple time. We went out for ice cream and a drive. It was relaxing and enjoyable. So thanks to my in-laws and Del for giving us those opportunities to focus on "us."
  • A wonderful massage this evening! Work was stressful at the end of the day and I left feeling like my neck, shoulders, and upper back were hunched up and in knots. Vicky, my massage therapist (and friend) had her work cut out for her. She managed to get rid of some of that tension and I am very appreciative of her! God knew what he was doing when he designed massage therapy! ;-)
  • A good-night kiss from an adorable little guy with brown eyes that made me melt the first time I looked into them.

  • Unconditional love - I surely am unworthy of God's love for me. There are so many times I fail and fail miserably. As a wife, a mom, a friend, a daughter, a human being. Thankfully, God's grace is enough to overcome my shortcomings. I am so blessed to be His child! 
Ok bloggy friends... surprise me! Share your hearts, tell me what you are thankful for today.