Matters of the Heart: April 2015

Life has been so busy since I last posted. (If you make it to the end there are pictures!) Graham is FINALLY out of the ICU and hopefully going home next week! (We have been in the hospital since January 13, the tracheostomy was February 5, and he got of the ICU on April 11.) When I last posted Graham had suffered an injury to his trachea from the custom long trach and he was sedated and on the oscillator. After 4 days he was put back on the regular ventilator and back to the shorter trach. Since then he has had many more ups and downs.

Graham had difficulty tolerating feeds (vomiting) and so the doctors insisted on trying to feed him in his jejunum (intestines) and bypassing his stomach. This involved 3 trips to radiology to try and place the j tube and it kept pulling back into his stomach. Apparently Graham's anatomy is not conducive with j tubes. We were actually kind of glad that the j tube didn't work because we believe Graham can tolerate food in his stomach if it is the right food.

I have heard from countless families in my online communities that their children did not tolerate commercial formulas and did much better on real blended food. I have been around and around with doctors in every department at Duke hospital and they do not allow parents to blend food and give it through the gtube while in the hospital. (nor will they blend food for tubies.) The arguments are that they cannot ensure the food is not spoiled and that they cannot track the calories as easily. So they trust parents to change trachs but not to feed their children safe food. Ugh.

Well my next move was to push for a product called Liquid Hope. It is an FDA approved tube feeding whole foods formula. After asking and pushing for weeks it was finally approved. We have to order it ourselves but they are allowing it!! This a huge answer to prayer. Graham has been on Liquid Hope since last Friday and the vomiting has stopped, he feels better, he is playing with toys (didn't touch toys for weeks), and the reflux is better. It is truly amazing. It is unreal the number of tube fed children whose vomiting and reflux are treated with medicine and surgery instead of change in diet to real foods. Who would have thunk that his body would tolerate real food better than artificial nutrition?!? (duh) This is something that the medical community needs to get on board with and I may just have to help facilitate that... Once Graham is home I may transition to blending his food ourselves or we may stick with Liquid Hope for a while (especially if insurance covers it). Blending food ourselves is a big responsibility because we have to ensure he gets enough calories in the right volume and all other necessary nutrients.

When we were advocating for real food for Graham in the ICU the doctors suggested allowing Graham to start eating orally again because that was the only way they could get real food in him according to policy. Great! So the speech therapist came and offered Graham something to eat and drink for the first time since early January. Then she decided that Graham has too high of a risk for aspiration due to his ventilator settings to move forward with feeding therapy. They are unwilling to even do a swallow study to show whether or not Graham is aspirating. Well offering the food and drink awakened a monster and Graham begged and begged and threw tantrums for something to put in his mouth. Can you blame him? The docs finally allowed small amounts of water on a sponge. I could have strangled that therapist for offering Graham something when she had no intentions of moving forward with eating/drinking. Well the feeding therapist refuses to even work with Graham until he is on lower ventilator settings and tolerating a speaking valve but the pulmanologist refuses to do any respiratory weans because they just want to keep him stable and get him out of the hospital.Graham not eating orally has been very difficult for Matt and I because one of the reasons we decided to do the trach was because we were told he would be able to eat with the trach and he couldn't with the bipap mask. Not eating and drinking in front of Graham will be difficult once he is home and as the twins get older. We hope that Graham's respiratory status will improve quickly and that our speech therapist outside the hospital will have a different perspective.

About a week after the speech therapist incident Graham became violently out of control. We couldn't tell if he was delirious or in pain or both. He would thrash and bite and pull at the trach and kick and cry for hours. This was a miserable time for all of us and very frustrating because the doctors couldn't find / wouldn't look for answers. Slowly things improved with new medicines and getting out of the ICU.

A few days after moving to the "Step Down" unit Graham's hemoglobin dropped enough that he had to get a blood transfusion. When the hemoglobin drops one of three things could be happening: he isn't producing enough red blood cells, his body is destroying red blood cells, or he is bleeding. They ran blood work and did a CT scan of his brain. The scan showed some bleeding on his brain. Not enough to have to do anything about it and not enough to totally explain the drop in his hemoglobin. The bleed is most likely from the blood thinner shots that Graham got twice a day for 6 weeks to treat an old clot in his leg. Ugh. We had protested the blood thinner because we knew it was an old clot and felt treatment wasn't necessary. The clot is still there and now he has blood on the brain. This could have been the source of his misery when he was so violent but we don't know for sure.

The doctors are continuing to closely track Graham's hemoglobin. They haven't exactly decided if it was an acute issue from being sick and having lots of labs drawn or if Graham has another more serious blood issue. This is one of the things that has to resolve before he can go home.

Graham has continued to fight with the Pseudomonas infection. Since his first hospitalization in October he goes on antibiotics for 7-10 days and then two days later his secretions get thicker and he requires more suctioning and then he gets a fever and then they draw samples (blood, urine, sputum) and determine its the Pseudomonas and put him back on antibiotics. He will probably battle with this infection until he doesn't have the trach anymore and we just have to try and keep it at bay. They have finally changed treatment plan and put him on an inhaled antibiotic which he will possibly be on long term. On for 30 days and off for 30 days. We will pray that the Lord will just take away this infection!

Since Graham has battled with infection and fevers the doctors called in the Immunologist. She ran tests and has diagnosed Graham with partial DiGeorge syndrome. This syndrome is also known as 22q11 Deletion but Graham isn't actually missing this chromosome. He meets the other criteria for the syndrome: heart defect and low T cell count. People with this syndrome would normally not fight infection well and shouldn't get live vaccines. Well Graham has not been a sickly child and did fine with all his vaccinations. So we are a little underwhelmed by this diagnosis but its something to keep an eye on.

The last week has been very busy as Matt and I make preparations for Graham coming home. We have to do lots of training for Graham's care and equipment. We have been approved by CAP/C which qualifies us for Medicaid as a secondary insurance which covers nursing care at home. We are lining up nursing care and supplies and making doctor's appointments and rearranging our house to accommodate Graham and all his medical equipment and supplies.

We are so thankful for all the prayers and support. Please keep praying that things hold course and we get home next week and stay home for a while. To God be the Glory.

There has been more misery than smiles unfortunately. But here are a few captured smiles! And they are increasing in frequency every day now that things are looking up! These are in reverse order cuz it happened that way and I'm too time crunched to change it.