WARNING this may be long and it's sure to be all over the place. I am spent physically, mentally, emotionally and spiritually. I want to share this all where it will make sense. Some of it will not make sense cause it doesn't make sense to us. Some of you may not care to read all the little details but I need to have them down for my thoughts. My heart needs to process some of this.
This morning I posted that I hated having a reason to go to Egleston but thankful that it's there. I hate going there this time of year. All the Christmas decorations are beautiful but they remind me of that dreaded year we were there for Michala's amputation. No child should have to endure the hospital ever especially this time of year but yet the hospital is full of sick kids. I pray those families dealing with everything are blessed in some way. My heart goes out to them.
Each time I hear something different about Abe, thoughts and memories of Mary Elizabeth being this age come flooding back. I didn't handle grieving the little girl I dreamed Mary Elizabeth would be as well as I should have so along with dealing with Abe's medical issues I am reliving Mary Elizabeth's and working through that too.
So we leave this morning at 6:00. We are 2 seconds from the house when I realize I have left my coat on the bed. My sweet patient husband turns around and goes back to get it. All the while I am thinking what a way to start the day. It's gotta get better right?
We get to Egleston and "our" parking spot is open but Mike parks next to it. It's sad when you have a parking spot. Even more sad when the doctors, nurses and cafeteria staff know you. You know you have been there way too often then. I asked him if he was trying to change our luck. He laughs and says yes it wasn't so good yesterday. OOPS! I forgot about yesterday. Well let me finish this thought first. The reason I knew he was trying to change our luck is because on Saturday when Tech was beating GA (yes that's hard for me to even say) Michala went in the bedroom where Mike was watching the game. Soon Mike is carrying Michala out of the bedroom. I asked him what was wrong and he said she was bringing Tech bad luck. They were either starting to play bad or GA was starting to play better. Either way Michala had to get out. He is very superstitious this way. If one of his teams starts playing bad he will change his position whether it's stand up, sit down, lay down or stand on his head until they start playing better. In some cases it just doesn't work.
OK so yesterday we leave at 5:30. We go straight to the GI lab but it's not open. We wait and we wait and we wait. Finally they open and we get registered. We get back there and remind them that we have to be next door at 8:20. Well it takes forever. I think it may have been this guy's first time doing this. Oh joy! So he finally gets all the paper work done. He is really shaking trying to get the probe in. I am thinking just do it and let's go. I am very close to saying could I please do it. He gets it in and we go down to Radiology for the x-ray. Once the x-ray is done he has to go back up to get them to check placement of the probe. He tells us to wait. Abe is screaming and having seizures. I have about had enough. So he comes back in and says I have to push it another centimeter. My baby is screaming and you have to do what? OK hurry and do it. Another x-ray, back upstairs to get them to check while we wait downstairs. Finally he is back down and says ok you can go. We go back upstairs to get Mike and Mary Elizabeth. So now you see why Mike wanted to change our luck. I tried to save ya'll some by leaving out some of the other details.
We are late for Abe and Mary Elizabeth's endocrinology appt. Not a good thing cause we know it's going to bump us further back. Our appt was at 8:20 & 8:40. We get there at 8:50 and get called back at 10:10. Man what a day already. Oh I forgot to say that Abe weighed 15.4 in the GI lab. Well endo weighs him and he weighs 15 with all his clothes and diaper on. We see Megan and she goes over everything. We laugh about the doctors reaction to his 0 thyroid levels from his last hospital stay that I had to talk with Rachel about cause I thought since he didn't make it it should be 0. Ok that's another story for another day but it was a good laugh. She wrote orders for labs but we decided to wait until the next day so we could get all the labs down at one time. You would think that was a good plan. RIGHT?
So we are out of there. We didn't get a chance to fit breakfast in so we run through McDonald's drive thru. YUM! NOT! It was quick and easy though. Abe was still screaming and still having seizures so quick and easy was the way to go.
We get home and it's time for him to have apple juice for the ph test. Oh it was not a pretty sight. His body so did not like all that apple juice that he had to have. He screamed even more. I made the mistake of giving him his CoQ10 at the same time. Two sticky things don't go well in the ng tube. So now when it's time for his milk it won't go through. I panic cause I know I cannot pull it out and unclog it because it's in the same side as the ng tube. I call Mo to see if I can leave it there and add a third tube to his nose but in the opposite side. She says yes but if you get too much resistance go through his mouth instead. Well now I had to find another ng tube. Finally I find one. Thankfully my sister is still here. She and Marlee Anne hold him down while I get the ng tube in and we get him fed.
The rest of the night was filled with trying to keep him from pulling the ph probe out of his nose along with trying to get him relief from the seizures. Mo calls back and says to give him a 60 mg bolus of phenobarbital. If that doesn't help then 2 hours give him another 60 mg bolus. He got those two boluses and he regular night dose and still continued to have them throughout the night. Reflux and that ph probe was causing havoc. I was so ready to get back to the hospital and get that out.
We got there this morning in time to eat breakfast in the cafeteria. It was really a good breakfast and brought back wonderful memories of Sam's mom and I having breakfast each morning together praying for our little boys and talking about how their nights were. Today was spent with us crying and talking about Marlee Anne. She is such a sweet tender hearted caring child. She has to deal with a lot. As Mike asked our blessing he asked for strength for me. I know nothing more humbling and great than to hear someone pray for you.
After the ph probe was removed we headed to Genetics. OK this is not a place that I love very much. I hate sitting in the waiting area while beautiful couples come in with their beautiful babies most likely with rare syndromes. I hate knowing what they are about to be faced with. I stopped and said prayers for each one. My prayer is that through it all God will proveil and these families will be made strong through these challenges. We met with the genetic counselor first. YUCK! I just hate it. She was nice and all but I would much rather be dealing with Karlene. We answered all the many questions. When she left she said Dr. Kendall would be right in. We are so incredibly blessed to have such an amazing mitochondrial specialist in Atlanta. People travel from all over to see her. We have never had anyone in Atlanta with her mito knowledge and it took us so long to get an appt. She was so nice and took up lots of time with us. She answered the questions we had. She said that she would like Abe to have a muscle biopsy if only for the fact that he would qualify for the upcoming studies if he has a confirmed mitochondrial diagnosis. Those should be in the next 2-3 years. For those that don't know there is not a lot that can be done for mitochondrial patients except for treating the symptoms and she said we were experience in that area. When she was checking Mary Elizabeth she suspected that she has CDG. Don't ask cause I don't know. It's something that we will all learn about when the test results come back. These is secondary to mito and there are 6 different types. Quite rare (imagine that!). She has only diagnosed 3 cases in her lifetime. One of those 6 types has a treatment for it. We will discuss all that when the test come back. Since it's genetic that might be awhile. She hands us the lab orders and off we go.
We left there and went back to Egleston for Abe's GI appt. We get that right on time. The see that Abe has two appts there and they check us in for both. I know that seems small but all it takes sometimes is something so small to make a huge impact and that really did. When Dr. Schoen comes in to see us she said oh dad is sleeping. I hadn't even noticed and he hadn't started snoring yet. I try to wake him up but he wouldn't wake up easily. She whispers let him sleep. I told her not to whisper and we both laugh. After a little bit of us talking he wakes up. She goes over his growth chart. Oh yes at genetics he weighs 15.2. At GI he weighs 14.7. That's what we have to go with. Well he made it to the 5th percentile and everyone is happy. Dr. Schoen will get the ph results on Thursday. We will then to discuss the fundoplication surgery for reflux. Everyone is in agreement now that we need to go ahead and do the g-tube. Since we are having such a hard time with seizure control, reflux, aspiration and pneumonia it will be best. This way when he is out of it from seizures or seizure meds he will still be able to get his meds and milk without putting him in danger. The g-tube, fundoplication and muscle biopsy can all be done at the same time.
As we were leaving that appt to go eat lunch the nurse stops us and says if we want to wait Dr. Holt will be right down. Mike takes Mary Elizabeth for lab work while I wait with Abe. Well the clinic lab calls genetics and they say they want the labs down at Egleston. He calls me from there and says whatever you do do not bring him here for labs. Just not a good time of year for all this. They get her blood on the third stick. As they are leaving to come back to meet us Mike says Miss Emmy's mother comes walking up dressed as The Fairy Godmother. He said she looked just like her. She said she has to have a teddy bear. She gives Mary Elizabeth a teddy bear and says now wait a minute. She gets over next to her so she could give her a kiss on the forehead. Mary Elizabeth came back with her new bear in her lap smiling from ear to ear.
Dr. Holt comes in and asked how I am. This is all happening while Mike and Mary Elizabeth is at the lab. I think I could say ok and leave it at that. No I am honest with him and tell him this is a little more than my heart can handle. I tell him how hard it is to watch. He asked if there was ever any time that he is awake happy. No - awake seizures - then meds to stop the seizures and he is back asleep. We still have possibly the ACTH and/or Valporic Acid. Neither of which he wants us to try right now. The concern with the Keto diet is the weight lose and poor growth. Which since he is already dealing with that it might be rough. We still thinks that might be our next step to try after the g-tube. He asked if I was still supplementing with formula and I told him no because I did not like how Abe sounded when he has it. His breathing is really bad when he gets formula even through the g-tube. I had been saying to several doctors that I was concerned about him having a milk allergy. They changed the formula but it was still milk based and still the same result. Instead of trying soy I thought I would just stop it and see what happened. I just didn't think much else about it after stopping it. Dr. Holt was examining him and said oh his face looks much better. When did he stop scratching it. I started thinking and told him I really wasn't sure. He said was it around the same time you stopped the formula. Sure enough it was. He said well I think he is allergic to milk. Good to know. While examining him I mentioned that Dr. Kendall thought Abe's liver was low and Dr. Schoen thought it was enlarged. Dr. Holt checked and agreed that it was enlarged but he feels it is from the high doses of steriod and once that's stopped it will go down. If not then he said we would discuss that. When Mo came in she said she didn't feel like it was a liver problem because he has had so many work ups for that that it should be fine. Dr. Holt watched Abe's breathing and when he timed it it was 152 while sleeping. He thinks he may be having a reaction to the topomax. Not a good thing because it seems to be working on some of the seizures Abe is having. The tested that and if it comes back positive we will decrease the topomax some. Mo wants us to monitor him on the pulse ox some.
We had to go to the lab for his blood work. It took forever to figure out what genetics wanted. Once that was figured out she took us back. OK some prayers went out for this little boy at the right time because this lady was amazing. I regret not getting her name. I am calling there tomorrow to see who it was because she was a blessing and someone needs to know that. I went through my typical spill about him being a hard stick, slow to bleed and showed her a couple of good places to try. First stick, just a little moving around and there comes the blood. Filling up those vials fast. She said I really shouldn't be getting this much blood from him. No one including me was thinking about the fact that he got orders yesterday from endo, orders today from genetics and neuro. I asked how much she was getting. She said 30 ccs. For those that don't know 30 ccs is an ounce of blood. I saw all the color leave his face quickly because he was bleeding really quick. She said you have got to feed this baby quick. Thank God for that ng tube cause he went down fast. We got settled and I gave him some apple juice to kick his sugar up quickly then fed him. It took awhile but his color came back. He is resting now cause he was having way too many seizures and had to have ativan again.
Thank you so very much for your prayers! Please continue to pray as we make decisions for Abe. Our desire is to have clear direction from God. We are wiped out and emotions raging so peace would be nice also. I know this email is all over the place. I hope it makes some sense. A lot of info to process in one day. I started typing this email around 7:00. Coming back and forth to it I am sure I left something out or something is not right but ya'll get the idea. If you made it this far thanks!