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.
LOVE your new post! It is sounding better and I am very happy that y'all have a new environment and a new change of scenery! Our prayers continue for Maia AND for Matthew AND for you both! I forgot to ask Mark how his mouth was feeling yesterday.... I hope HE is feeling better, too!
ReplyDeletePraying for Mattthew, too! What a long journey you all are on. It will be good to get home in a couple of weeks. May the time go quickly for you all!
ReplyDeletePraying for Matthew- and for Maia of course.
ReplyDeleteSo glad to hear Maia is out of the PICU and will be receiving so much therapy. I've been praying for Matthew and hope spending more time with him will help. The following verse is my favorite from our medical trial, and I hope you find it encouraging, too:
ReplyDeleteRemember not the former things,
nor consider the things of old.
Behold, I am doing a new thing:
now it springs forth, do you not perceive it?
I will make a way in the wilderness
and rivers in the desert.
Isaiah 43:18 & 19
Continuing to pray!
Holly S
Continuing to pray for Maia, Matthew, Mom & Dad! Hang in there, knowing many prayer warriors are storming heaven for your family.
ReplyDeleteSo happy to hear about Maia's successful transfer. It is so encouraging that you are able to cuddle with her more, which will go a long way for both of you. Surprising how much dressing in her own clothes will help, too. Makes it all about recovery and not illness. I think that alone will start feeling more like normal to Maia. It is also such a big deal that she retains a normal gag and swallow reflex. Go Maia! Praying for speedy recovery for Maia, comfort, peace, and stamina for Mark, and Melanie, and assurance of his parent's love and presence for Matthew.
ReplyDeleteThank you for this post Melanie. I am very relieved that Maia is getting OT and PT. We believe my husband's recovery from being a quad from the neck down in July 2010 to feeding himself &walking with the seralift in
ReplyDeleteAug 2010 is because of the early ot & pt. Our son and I started moving his legs and hands and arms while he was in a drug induced coma and he had excellent physio soon after he was on the regular floor. I think you will be amazed at what she achieves with therapy. Every little gain that she achieves will be huge. I can remember cheering when my husband could rub his own itchy nose! Thankyou for expressing concerns about Mathew, the Lord has placed him heavily on my heart and mind. I will be a prayer warrior for Mathew, he is scared and overwhelmed and worried too. I am believing in miracles for Maia, covering her in prayer and your family too and especially Mathew.
Jacquelene Langeman
Canada
What a blessing to have such compassionate friends, and to have such compassionate caregivers (doctors, nurses, therapists, etc.) at the hospital! That had to make the transfer much, much easier for you, though clearly it frightened Maia initially.
ReplyDeleteThe intensive therapies which Maia will be receiving sound ideal. I have a feeling she will surprise everyone with her recovery, and am praying that it will be swift and complete.
Poor Matthew! No doubt he misses his little sister and is also scared for her - it's so hard to explain to a young child when such an unexpected and terrifying illness hits so hard and so swiftly. Perhaps when Maia is a little farther along the recovery road, she and Matthew could Skype?? Could he make get well cards or drawings to send to Maia? Maybe pick flowers from Nana's garden to send to her, if she's allowed flowers now? I think involving him in her recovery might help him feel less confused.
Another idea would be for one of Matthew's stuffed toys to have "surgery" and "get well", complete with bandages, "doctor" visits, and so on (visits from Dr. Nana, Dr. Papa, Dr. Mom and Dr. Dad would be most therapeutic, of course). A shoebox can easily be converted to a hospital bed for a Teddy, and paper towels make good sheets and bandages. This might be a good way to discover what Matthew's feelings about his sister's illness are, so he can be helped to a better understanding.
And of course, all of you, especially your precious children, are in my prayers...
Susan in Ky
Cousin to 2 from EE
It sounds like THIS is the place Maia is meant to be. I pray it continues to be so. If you need help with anything, please DO NOT hesitate to ask. Our whole family continues to lift each one of you up in prayer.
ReplyDeleteI will pray that Matthew begins to understand and is given peace with all these disruptions to routine. One day at a time is healing will take place.
ReplyDelete