The last three weeks have been extraordinary for us in that Noah's had multiple surgeries, two hospital stays, a sleep study, and far more out of town doctor's appointments than usual. While we are incredibly thankful for the truly phenomenal care he gets in Greenville and Columbia, these hospital stays have really reinforced what a difference HOME makes. The decisions involved in keeping Noah home haven't always been easy and the sacrifices are very real - but oh, are they worth it! It's sobering to see the changes in his little spirit when he's in the hospital and to realized that he'd still be spending the overwhelming majority of his life in hospitals if we didn't have an exceptional medical team that allows us to care for our very complicated little boy at home even in circumstances where most protocols would mandate a hospital stay. (For those new here - we aren't endangering his life by not hospitalizing him. We have the ability to treat him very aggressively with backup from our pediatrician and our nursing team - in fact, we can respond to infections more rapidly at home than if we needed to take him to the hospital every time he got sick.)
Having said that, every day and night we've spent away during these last few weeks has been absolutely necessary. While I can do almost everything Noah needs at home instead of in a hospital, surgery is definitely on the "don't try this at home, kids!" list. It was worth spending last week in the hospital to be sure that we were giving Noah's body every chance to beat back the infection before placing a new line. At the end of it all, here's where we stand:
~ The plan in Columbia was to pull his infected central line and place a PICC line (a more temporary kind of central line). Once the doctors felt that it was safe, they were going to replace the central line and pull the PICC. Unfortunately it was not possible to place a PICC. Noah was an INCREDIBLE trooper - they spent over 2 hours trying to get the PICC in with NO sedation (sedation was deemed too risky for Noah). His sublcavians are just far too damaged and so we ended up with a midline which is a slightly glorified I.V. that looks like a PICC line but doesn't ever reach a central blood vessel. His poor little arm is black and blue and purple and still bleeding a bit from the cut-down site.
~ Our line surgeon told us that it was no longer going to be easy to get lines into Noah. These are sickening words to hear when your child's life literally depends on the doctors being able to keep a central line in his body. Noah did get a new line placed on Friday in his left jugular. The incisions in his neck and chest look pretty good but are bothering him a good bit.
~ Noah has two wounds on his chest from the two central lines that were pulled recently. We have far more experience with central lines than we'd like to have, and based on that experience I can say that I'm not thrilled with how those wounds are looking. The wound from where the line was pulled Tuesday (a week tomorrow) is quite large and deep and is still bleeding slightly. I'm not worried per se and don't think it needs any intervention beyond what we are doing (dressing changes and topical antibiotics every 8 hours plus I.V. antibiotics every 8 hours), but it hurts Noah and it hurts me to see it. The wound from almost 2 weeks ago looks better than the newer one but still doesn't look terrific.
~ Noah had a lot of labs drawn today. I still haven't heard about his hemoglobin which was nearing his transfusion threshold when we were discharged. (What with the attempts to place a PICC and the line surgery, it dropped almost 3 grams in 5 days!) I'm hoping that it will start trending up since it dropped due to blood loss and not due to illness. We did get back his CMP his liver is very angry at us about all of the antibiotics. His liver enzymes are about 10x higher than they should be. He'll finish his I.V. antibiotics in just a few more days and if we can keep him infection-free for more than a couple of weeks I think his liver should start looking better pretty quickly. (So thankful that we were created with livers that can regenerate!!!)
As always, labs and numbers and surgeries don't come close to painting a true picture of how Noah is doing. He really does look great - sore and appallingly bruised and battered, but is happy and chipper and playful. He's been having fun with a paper bag puppet kit he got in the hospital as well as the Arctic Batman Lego set he got. He's hoping to go to the Fall Festival at one of our local churches on Wednesday . . . and you'd better believe we're going to do all we can to make sure he gets there! He's been playing lots of make-believe knights and dragons games and and watching lots of Curious George on his iPad. We're planning on going ahead with his regular physical therapy appointment tomorrow but scaling back a bit on our expectations for therapy until he's less sore.
There are no words to say how happy he's been to be back with his brothers and sisters. He misses them SO much when he's not home!! He was such a hoot in the hospital - he told everyone he saw that he has 4 brothers and 3 sisters, and took great pride in being able to list all of their names. :-) Every time he got any little bit of fun in the hospital - a balloon, a coloring book, a trip to the playroom, etc., he'd say how much some sibling or another would enjoy it, or how he wanted to save some part of his fun for one or more of his siblings. When the Child Life Specialist gave him the paper bag puppet kit, he carefully set aside the materials for the two puppets that he thought Sarah and Mary Faith would especially enjoy. Almost as soon as he got in the door he was calling out for one of his big brothers to bring him his suitcase so he could give Sarah and Mary Faith their presents. He was also very eager to share his new little Lego set with his brothers.
If each of you could be a fly on my wall for a week
We are very blessed that a wonderful organization called Ride to Give chose Noah as their "cause of the week" last week. They have put together a fundraiser to help us raise the remaining money needed to get a wheelchair accessible vehicle for our family. I want to be completely transparent - we've been fundraising for this ourselves for quite a while, AND a friend just finished up a Facebook auction to raise funds for our vehicle. We are being very careful not to over-fundraise and Ride to Give chose their fundraising goal based on the amount that we already raised. In other words, we started off working to raise the money ourselves, a friend pitched in and did an auction, and Ride to Give is simply trying to help us finish raising the remainder of the money. We don't want anything extravagant - just a safe, reliable, and appropriate vehicle that will allow us to keep helping Noah live life to the fullest and allow our entire family to keep creating memories together.
With all of the craziness of the last few weeks, I did very little to promote our auction but God really blessed and every item brought in generous bids. By the same token, I have done very little to help promote the Ride to Give fundraiser that's been going on for a week now, but I know that God can still bless and help us reach our goal so we can purchase a safe and appropriate vehicle. I'm going to ask if each and every one of you could take 3 minutes or so to share this. If every one of you put this on your blog and/or Facebook wall, I think we could reach our goal within a day or two. Noah's Ride to Give page is https://fundrazr.com/campaigns/9cn28/ab/61Edl0. There are links right across the top for you to share on FB, tweet, email, or embed a link on your blog very easily. Believe me, I know it's easy to think that sharing something like this won't make a difference, but the truth is that you can't possibly know how the Lord will use your efforts or how far they may reach. I would love to get back on here in a couple of days and be able to share that we purchased our new (to us) bus!! We've already found one in Omaha that is ideal and extremely reasonably priced - we're just waiting for the funds (and praying no one else buys it in the meantime!!!!!).
Blessings,
Kate
