I love my hoodie!

More Improvement

Hudson continues to get bigger and stronger each and every day. He is currently still weaning off narcotics and his vapotherm at very slow rates...and tolerating the changes!! They have tried weaning him several different ways...but slow is the the only way he continues to improve... He is now on clonidine for opiate withdrawal to try and help him have a more comfortable transition to life without methadone and valium...won't that be nice! He has been on heavy narcotics his whole life so it has been quite a challenge. Also, he is now on the lowest level of vapotherm (5 liters per minute..and we started on 12). He has been on vapotherm for almost 3 weeks and once he proves that he can breathe without distress on 5 they will pull the vapotherm and start a regular oxygen nasal cannula with is a lot less flow. This will be a huge transition! He did have some pulmonary edema show up (fluid in the lungs)but with extra diuretics we have seen much improvement...whew! Mommy and Daddy were so very thankful that it was only fluid...his chest xray had been worsening for a couple of days and we were very concerned it could be a perfusion problem (blood flow to lungs)and he would need a cardiac catherization....but so far that is not neccessary. Since he is nine weeks old this week and has never seen life outside the CVICU we have tried to make his life as normal as we can. He probably has the coolest ICU room ever at this point...of course the safari animals...we call it the "Safari Suite"....his one of a kind giraffe swing with the best surround sound noise maker ever...and all sorts of cute toys/eye candy for him to stare at and develop good eye coordination! Oh..and I almost forgot..we now have his own bathtub in his room and we have given him a real bath for the past 3 nights before bed to try and get him on some sort of a routine for when we get to go home. He's not too sure about bath time but always chills out for a couple of hours after his bath and just stares at his toys....so I think he really likes to feel clean.....not to mention the only time he wakes up crying the past couple of nights is when he has dirty pants....smart boy!!! He likes to be clean!! And...if all goes well this week and he can successfully get off the vapotherm then we will be moved up to the recovery floor....yeah!!!!

Getting Closer

This past week has been pretty mellow. Hudson is gradually weaning off his methadone and valium at a slow rate. Sweet boy has been extremely sensitive to any changes to his medications so we are just letting him tell us what he can handle at this point. He is still on vapotherm but gradually weaning down on that as well. He is now in a big boy crib and has a colorful mobile that his Mimi brought him to help with his eye coordination. Mommy and Daddy are continuing to dress and bathe Hudson daily and by now seem to know all the hospital staff. Hudson is 2 months old now and weighs 12 lbs 2 oz!! Mommy thinks Hudson is the cutest baby she has ever seen...even the ICU nurses fight over him... The current battle plan is to get him weaned off of his narcotics and vapotherm to a regular nasal oxygen cannula and then they will take him to the OR again for another bronchoscopy before we are moved upstairs to the recovery floor....but we are definetly getting closer!!!

Another Rocky Weekend

This weekend was not one of our best. It all started friday when the ICU team decided to try to wean Hudson off his vapotherm too quickly. He immediately failed and was quickly struggling to maintain his airway. He was put back on vapotherm at a higher flow than he was initially on when extubated. Then came Saturday...the ICU team decided to adjust his narcotic schedule and he began to experience narcotic withdrawal. This was probably one of the worst things for a mommy and daddy to watch. Sweet baby boy was not having a good day and was not the same baby we have loved since the day he was born..he was a completly different baby. He was inconsolable and uncomfortable to say the least.....Saturday night he developed a fever of 102 and got completly worked up for an infection. Blood cultures came back positive for Staph again...but this time within the bloodstream. One by one..the issues have been addressed. His medication schedule was changed back...within 24 hours his fever was under control with tylenol and IV antibiotics and his breathing isn't as good as it was when extubated but we have definelty seen some improvement in the last 24 hours. Yesteday, he was a happy baby again. He was smiling, lying in mommy's arms and had a big time in his giraffe swing that daddy brought from home. It was sooo good to see him feeling better!! Currently, the plan is to continue IV antibiotics..keep his breathing stable and give him a couple of days of recovery from this gradual spiral down over the weekend. Oh yea...and he pooped on mommy for the first time yesterday..an explosion through the diaper.....luckily mommy had on a brown shirt....but it sure was stinky!

Over the Hump

It finally happened!! Yesterday afternoon the ICU team decided Mr. Hudson looked good and pulled the ventilator. It was the best moment yet!! He handled it very well. He was a little frightened at first but when he realized the tube was no longer down his throat he started looking around and wiggling his arms..he attempted a cry but of course it was very faint and hoarse. Mommy and Daddy finally wrapped our arms around our sweet baby yesterday and only put him down when he needed xray or breathing treatments. He is now on vapotherm (warm humidified continuous oxygen through a nasal cannula) and they have already started weaning down the vapotherm today because he is doing so well! So far, so good! Hudson is so happy he has not wanted to sleep since being extubated so mommy and daddy are both pretty tired..he is ready to party!! This morning was wonderful!! Hudson was happy, smiling and making noise!! We haven't got to hear him make any noise since he was intubated at birth... so his cry's, cough's, sneeze's, coo's all have been the most wonderful sounds mommy and daddy have ever heard! He was seen by physical therapy today and did an excellent job of holding his head up...what a strong little guy!!! He also discovered his fist's and has been putting them in his mouth as well! The next steps are to wean him off the vapotherm, methadone and valium and get him feeding on his own. We will start working with speech therapy tomorrow to trial his swallowing ability and mommy and daddy plan on getting that feeding tube out by early next week...he already has the sucking down and we know he can do it!!! Such a little fighter!! What a wonderful way to spend his 6 week birthday!!! GO Hudson GO!!!!

Choppy Waters...but Smooth Sailing Ahead

This weekend was a little rough on Hudson. Late Saturday and early Sunday he had a couple of episodes of dark brownish vomitting (old blood). He showed all the signs of a gastrointestinal bleed. They stopped all his feeds and started him on IV nexium as well as put down a nasogastric tube to evacuate the rest of the old blood pooled in his stomach. He was a little anemic but with time his blood work came back normal. He was a liitle cranky the past couple of days at times due to lack of food...poor guy. He has also had some wonderful moments of being very awake, alert and happy! Today he went back into the OR for another bronchoscopy to look into his airway and possible extubation. The ENT and cardiothoracic surgeon seemed pleased with his healing but felt that they would need to leave him on the ventilator another 24-48 hours to get all the swelling down from the trauma of the surgery today. He has been pretty uncomfortable tonight..and he ended up having to be sedated and paralyzed AGAIN so that they could change out the size of his tube (where oxygen is delivered via ventilator) due to a bad air leak. Poor guy is going through the ringer! They currently have him on IV steroids to reduce all his swelling from all the trauma today, but the good news is that they feel pretty confident that they will be able to get him off the ventilator tomorrow or thursday.....YEAH!! Hudson will be much happier without that big tube and so will mommy and daddy!!!

Making Progress

Hudson is growing so much!! Almost 10 lbs!! This has been such a wonderful week for him. Daddy is so proud to say that Hudson smiled at him 3 times!! It was so cute! He had a cardiac MRI tuesday to evaluate his pulmonary arteries and it showed that he has near normal blood flow through both his right and left PA so it will not be neccessary to precede with the cardiac catherization! YEAH!! He also had a PICC line put in yesterday and needed little sedation for this. This morning they pulled his 2 intracardiac central lines and there was very minimal bleeding so no transfusion was needed...even better! Now they are just continuing to wean his methadone and valium levels (it is a gradual titration down that they have been weaning for the past 2 weeks)...and he is scheduled to go back to the OR Tuesday for another rigid bronchoscopy to evaluate his airway and possible extubation!!!! He has one more setting to wean down to on the ventilator to be able to be extubated and they are going to drop the ventilator down today. Later today mommy will be able to put his first outfit on and wrap her arms around him...she can't wait!! And....there was another delivery last night Ernie the elephant.....a special gift from his loving Daddy!! More good news to come!