Close to Going Home

All,

Sorry for the lack of posts in the past week-- I've been busy, tired, and just didn't feel like blogging. Despite my lack of energy, Madeleine continues to do very well. The surgery went great last week and she's recovering very well. Today was the week anniversary of the surgery and the original trach was replaced today and the surgical sutures were removed. The trach surgeon was happy with how it looks and has cleared her for normal maintenance procedures. With that in mind, here's a recap of everything we've learned about the trach and the medical plan going forward:

- The trach sits at the base of Madeleine's throat (if you want to know exactly where, follow your sternum up with your index finger until you get to the end in between your collarbones-- there should be a semi-circle opening. )
- The trach is easily removed and has to be changed on a weekly basis. The most frequent question I've gotten so far is "what if she pulls it out?" The answer is that we just put it back in. The trach is held in place by velcro straps that make it look like a tight necklace. (I'll take pictures soon so you can see what it looks like.)
- Madeleine has been weaned to very low levels of ventilator support (for those that care, she's on a rate of 8 breaths/minute and 12 on pressure.) She doesn't have to have this support all of the time but it ensures that her lungs don't collapse and also allows her to breathe more easily, thereby conserving calories for growth. She is also getting 30% oxygen support-- normal air is 21%. This low level of oxygen support is given to help her lungs develop and should also help prevent increases in Madeleine's pulmonary hypertension.
- Madeleine is going to be on 24 hour ventilator support until at least April of next year. This isn't typical and isn't absolutely required for Madeleine but the doctors have set this expectation as they want to maximize her growth and also want to protect her in the event that she gets sick this winter. Since her lungs are extremely compromised and her pulmonary hypertension can get drastically worse during an infection, they want to have the ventilator providing support throughout the winter. This sounds pretty bad but the vent came last week and it is small-- about the size of an old laptop. Its heavy but its size makes it fairly easy to maneuver.
- In April, we'll determine the path going forward. A lot will depend on how her lungs are performing and how much weight she gains. In the spring, they'll re-assess her pulmonary hypertension with the expectation that with her growing, the PH will be lower. Additionally, they'll re-conduct tests on her GI tract (swallow study, sleep study, milk scan, etc.) to determine if Madeleine can begin feeding via her mouth again. (she's going to be on tube feeding via the NJ tube throughout the winter.)
- In the next few months, we're going to spend a lot of time at home as we've been warned to limit Madeleine's interactions with others given the concern surrounding infection. We hope folks can visit (sans children) and hope that you'll understand our hyper-vigilance regarding infection. (prepare to be inundated with Purel when you stop by.) We hate the concept of keeping Madeleine isolated but since any infection can be life threatening, we've accepted that as a fact.
- In short- the plan for the next four months is to keep Madeleine at home as much as possible, to keep her happy and stable, to see significant gain in weight, and-- most importantly-- outside of a few checkups, to AVOID THE HOSPITAL AS MUCH AS POSSIBLE. (We love the foks at Children's but I think they understand the necessity for capital letters.)
- Given Madeleine's medical needs, we're going to have nursing care in our house for 18 hours/day. This care will allow us to go to work knowing that a nurse is caring for Madeleine. Additionally, we'll have a nurse at home when we're asleep so that we don't have to worry about Madeleine. The big concern is that Madeleine must be suctioned when she is on the ventilator and we can't worry about that and sleep soundly. This requires some major life changes for Kirsten and I and we've already taken one step by moving Madeleine's nursery onto the ground floor office. (My parents have done the Lion's share of moving and painting and we can't thank them enough.) Again, these were changes we didn't want nor anticipate but by moving the nursery to the ground floor, we limit the amount of lifting and moving of all of Madeleine's medical equipment and we also limit the intrusion of a nurse when we're sleeping (and I am snoring.)

That's the major changes that we've learned/made in the past week. We're also still getting used to the cosmetic nature of the trach. I'm now getting to the point where it doesn't bother me but the first few times I saw it, it was definitely difficult to see. (Its hard to explain.) I understand why Madeleine needs it and I think it was the absolute best decision we could have made as she looks much happier and more comfortable. Still, its difficult to see something like that on your child. Kirsten and I recognize that others may have a difficult time the first time they see it and that's just something we'll have to get used to. It isn't a permanent fixture on Madeleine-- its just medical support that she needs so that she can grow and develop.

That's all for now. We're hoping to get Madeleine home soon as she'll be medically cleared on Wednesday or Thursday. The logistics of identifying nursing and getting the insurance and other stuff resolved is slowing us down right now but I'm sure we'll get all of that figured out in the next few days. Thanks again for your support!

Brent and Kirsten