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!

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.

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)

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!

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.