Home for 3 days now

After being gone for 29 days, Alexander is home! 

Alexander has been home for 3 days now and appears to be doing well. Words can't describe how good it feels to be home and to see the smile on Alexander's face. When we arrived home on Thursday afternoon, Alexander played with every toy in the house, with a big smile on his face- it was like it was Christmas Day.

Since my last post, there wasn't much change except for that Alexander's surgery was postponed. His surgeon agreed with his cardiologist that it is best to wait as along as possible; wait for him to get bigger (closer to 27 pounds or more-he's currently 25 pounds), and for him to stay healthy.  His oxygen saturations have improved some since the last post as well. He requires less than 1 liter while sleeping but while active he requires 2-3 liters of oxygen to keep his saturations in the high 60's to low 70's. Activity wise, he seems to be doing great inside the house, but once we go outside, he can only walk for a short period of time before Wes and I need to make him stop or pick him up. Alexander will probably be on oxygen until his Fontan, but we are hoping that as he gets bigger and his heart starts to relax more, that he won't require so much. He has a follow-up clinic appointment on Thursday and we are hoping for good news.

For now, we are slowly adjusting to the new medication routine (6 meds instead of 3), the 50 feet of oxygen tubing following him around the house and getting back into some sort routine that we had over  a month ago. Thank you all for your prayers and positive thoughts. In addition, THANK you to all who have contributed to Alexander's GoFund Me account and provide help to us while Alexander was in the hospital. We never did get a room in the Ronald McDonald House, so the help that was given was very much appreciated! I will write a new blog post after this coming week of therapy and doctor appointments. I hope that it is short and sweet-with nothing but positives. <3 

3 WEEKS!

Today marks the third week Alexander has been in the hospital. The third week of living in the hospital and calling it "home". Three weeks in  and still no answers. Alexander has made the turn for, what seems like, the better! He FINALLY tested negative for Rhinovirus, which means there is no more isolation precautions, which means he can FINALLY walk the hallways and go to the playroom. Monday was the first opportunity for Alexander to finally go for a walk outside of his room. He was LOVING it and LOVED playing in the playroom. He required 2 liters of oxygen while walking but was keeping his saturations above 63.

Yesterday, there was much more walking. He wanted to walk all day but his heart wouldn't let him. By the afternoon of playing and walking up and down the hallways, he required up to 4 liters of oxygen to get his saturations up high enough.There was actually talk of going home tomorrow!! I was so ready for it too! But, that was quickly changed by the surgical team. They said he couldn't go home tomorrow, that they wanted to keep him until Thursday and that pre-op would start tomorrow incase Starnes decides that having the Fontan is the best decision, he would do it Thursday. Well that just didn't work for Wes and I. We told them no on the pre-op and wanted to wait until we discussed with Dr. Starnes (Alexander's surgeon) proceeding. Saying no to pre-op means postponing the surgery. I wasn't ready to stress Alexander out over the pre-op stuff if he wasn't even going to have the surgery. Postponing the operation also allows BCH to send their thoughts over, which sounds like we should hear from them no later than Monday.

There was not a lot that happened today. The day just consisted of keeping our Superman happy and moving. Although he was tired most of the day, he still proceed to play all day with his grandparents and Auntie. Tomorrow, Dr. Starnes  will be meeting with the cardiac team to discuss Alexander and then consult with us about his plan and the next few steps to getting Alexander healthy and out of the hospital. Tomorrow morning is a big day and I'm sure how I feel about it. I know I want answers but will Dr. Starnes be able to provide me with the answers I want to hear?

Our Superman needs your thoughts and prayers to continue to heal, grow, and stay strong so that he can get out of here and experience life outside of the hospital. <3

Time for a Second Opinion

Day 16- Still here and still no answers. The team (cardiology, cardiothoraic surgery) were suppose to meet yesterday to discuss our Superman, however, a few surgeons (including Alexander's) was not in town, so the meeting will happen next Thursday. Since the meeting will be next Thursday, his Fontan will NOT be happening next week, nor will it be happening in the near future. As the days have gone on, I have learned that it would not be a good idea for Alexander to have his fontan surgery now. It is to risky and could cause lots of complications. There is also a rumor that Alexander might not ever be a good candidate for the Fontan (it is all based on his lungs: he needs low pressures in his lungs and healthy lungs) because of the current pressures in his lungs and the fluid that is around his heart. So it is now time for a second opinion. I have contacted Boston Children's Hosptial and I hope that they will get all of Alexander's information early next week and will have some information by the end of the week (hoping).

As of Thursday night, Alexander is back on the CV Acute floor. He is still having a few seizures but only staring spells. He is back on 1.5 liters of oxygen because when he becomes active, he struggles to keep his oxygen saturations in the low 70's. This was not what we wanted and it may tell us that the steroid was working. The steriod that probably contributed to Alexander's seizures on Tuesday.

Alexander was also tested for rhino virus again to see if the isolation can be removed (wearing gowns and mask around him)  and he does. :( This means he has to stay in his room and that we still can't get him walking in the halls to really get a an idea of how long it takes his oxygen levels to drop. Especially Since the rooms only allow him to walk for a short period of time before becoming distracted with something else. So Wes, I and the grandparents continue to be creative with keeping Alexander busy and moving around, so that everyone can get an idea of what his activity levels look like  To top it off, he has an IV in his hand (sometimes both hands) which makes it difficult for him to try to do so much independently-but he's doing as he always does-makes the best of it and figures it out.

So, to wrap up the few days: not much has changed. We are in pause mode waiting for Alexander do improve, waiting for the surgeons to decide what is the next best option, and waiting for BCH to gives us their opinion.  If you'd like to visit Alexander and are healthy, you may! For those of you that want to help with keeping Alexander busy, send me a message with ideas :)

Thank you everyone for your phone calls, text messages, positive thoughts and prayers. We all appreciate it so very much. <3