Saturday, April 21, 2007

...And Back Again!!

We are back home!! Noah was admitted Thursday for IV fluids overnight and his GJ tube was put back in yesterday. We were home by evening and all is well. A nice quick visit!! Hopefully we can keep this tube in a little longer this time.
We also met with Noah's ENT and Plastic Surgeon on Wednesday. Noah's ear tubes have come out and he failed his hearing tests because of the fluid in his ears. So when he has his palate repair, he will get another set of tubes put in. We will do more hearing testing after that. His surgery date of May 11th has been cancelled due to lack of OR time (anesthesiologist and nursing shortages). So rather than try to find a new OR time for him now, we have decided to try to reschedule it for the fall to hopefully give Noah some time to get bigger and for us to have a break from the hospital! We are not going to be doing any jaw surgery, as his sleep study shows both central and obstructive apneas. Jaw surgery might help the obstructive ones, but not the central ones. Noah's lower jaw has also grown nicely and has completely caught up to his upper jaw. So the surgery date in fall will be for his palate repair. Hopefully that will be the last of the surgeries for a while. As far as Noah's sleep apneas, we will meet with respirology in July and discuss starting c-pap (a machine that would blow air into Noah's nose via a mask to keep the airway open).

Thursday, April 19, 2007

Off To the ER...

Here we go again... Noah decided to pull out his GJ tube again last night. This morning his drain is full of formula, which means the tube must be out of the jejunum and in his stomach. So it is off to the ER we go to have that tube reinserted and rehydrate Noah with some IV fluids. Hopefully we will be in and out and back in our own beds tonight...wishful thinking!!

Sunday, April 08, 2007

Saturday, April 07, 2007

Settling In

It has been a few days at home now and we are slowly settling in. The house is begining to have some order restored to it and the kids are getting used to having "moms rules" again. It seems that we never have enough time between hospital stays to truly settle into routine. I never even completely unpack, as we anticipate the next fever spike. TPN also comes with it's own new set of risks that could send us running back to the ER. It's a frustrating way to live for all of us and yet it seems to becoming our "normal". It is difficult to plan too far in advance as I am always wondering if Noah will be home. Kailyn prays every night that Noah won't have to go back to the hospital. He has already caught a cold since we've been home despite our best efforts to protect him, and we hope and pray it will not turn into anything more serious.

Noah is on IV Cephtazidime until next Friday for the pseudomonous infection which we give 3 times a day. His last blood culture from his port came back negative, so hopefully we will be able to treat this infection and not have to remove the port. We started home TPN on Tuesday and it has been going well. We had some trouble with the lines and filters the first night, but we seem to have sorted it out now. At 8pm he gets hooked up and runs until 8am the next morning. He is pretty much stuck in his crib for the period of time, but spends most of it sleeping. It is still hard to believe that Noah is on the home TPN program. Through a huge miracle and some pulled strings, he managed to bypass the year waiting list and was given priority so we waited less than a week!! And once again, our medical background has come in very handy and instead of taking 3 weeks to be trained in home TPN, we were able to do it in a couple of hours and get Noah home right away. I haven't worked much with TPN before though, so it's still alot of new information to take in, and this new world that we've entered is a bit overwhelming. But I'm sure, like the GJ tube, it will soon become second nature to us. And it is so worth it all to put Noah on the scale each day and watch his weight go up. He is just over 11lbs now!!

Right now we are only running lipids (the fat portion of TPN) and he is also still being continuously GJ tube fed. When he is admitted to hospital again, we will start complete TPN (basics & lipids). Then he will be fed completely through his port, directly into his vein and his gut will get a full rest for a while. We decided not to start the basics now because it will take about a week in hospital to stabilize Noah's bloodwork before he could go home again.
A couple of other new things came up in hospital. Noah was also started on iron in hospital which he takes through his GJ tube twice a day as his bloodwork revealed he is anemic. Also he was referred to an immunologist who will do more testing on his immune system to make sure that it is normal.

And now for our most exciting news ~ Noah is sitting!!! He will sit for a good couple of minutes before he topples over which is definately a great start. It's exciting to see him progressing in this way. Now he wants to sit all the time though, so I've been setting him in the laundry basket with some toys and dragging him around the house with me. He definately became spoiled in hospital and wants someone's constant attention. He loves it when Kailyn & Joshua are home and they read to him or dance for him. Kailyn is a wonderful little mother and helps out lots with Noah's care.

A huge thank you to all of you who have taken care of our family during this last hospital stay. Thank you for all the prayers, cards of encouragement and food brought to the house and to the hospital. I didn't have to cook this past week which was SO helpful!! Thank you to our small group for the many visits that kept me sane. Thank you Chris & Hilda for the daily lunch service. Thank you to our home care nurse, Nicole, for your daily visits and coffee delivery. And a huge thank you to the staff on CH5 who have become like family to me and brought me books and movies to help pass the time. You took such wonderful care of Noah and we appreciate everything you have done for our family.

Monday, April 02, 2007

Back Home!

After another long 52 day hospital stay, Noah is finally home again!! He had another blood infection (pseudomonous again) which lengthened our stay. Our health care team worked really hard to get us home and so we are now set up with home IV (so we can give Noah IV antibiotics at home), and tomorrow we will start IV lipids (TPN) which we will run for 12 hours each day. Noah is looking great and gaining weight with the TPN (almost 11lbs!!). It will be alot of extra work here at home, but it is so worth it to be able to be together as a family again!!