Nom. Nom. Nom.

I will start with the biggest and best news first... Graham is eating by mouth! Graham had a swallow study on June 30th and he aced it. He was completely cooperative, letting us strap him in a tiny seat enclosed by an xray machine. He willing took all foods and drinks and swallowed perfectly on all consistencies. He is approved to take WHATEVER he wants by MOUTH!!

The speech pathologist was stunned. She couldn't believe that with Graham's respiratory history and not eating for 6 months that he did so well. She put her hand over the trach on the xray image and said if the picture didn't show the trach we wouldn't be able to tell it was there from his swallow pattern! Graham's home nurse was in tears and I was close. (I don't cry anymore. A 6 month hospital stay for your 2 yr old will do that. It will come back one day.)

We praise God for this milestone. It really is a MIRACLE. If you recall we had him on thickened liquids and pureed foods in feeding therapy last fall. Now after intubation causing some vocal cord paresis and the tracheostomy and not eating anything since January he is swallowing perfectly?!?! God answers prayer!!

This is such a game changer for our whole family. Graham is THRILLED to be eating again. We have not eaten or talked about food in front of Graham for months and now he can sit at the table with everybody else and eat. We are taking it slow with easy to eat foods such as crackers and applesauce. We are trying to get him in the UNC feeding clinic to for help moving forward and guidance on weaning gtube feedings once he is consuming more by mouth. Right now eating is more of a quality of life thing for Graham. The gtube will be around for a good while still and we are ok with that.

Look mom, no vent!
Graham has also been approved by the pulmanologist for 30 minute daily trials off the ventilator! (He still has the trach in his neck but it isn't connected to the vent.)  Graham can breathe well enough on his own for 30 minutes as long as he is playing happily. If he gets anxious or upset then his airways start to collapse and he has to go back on the vent. A small step in the right direction.

Nurses
We have one day nurse four days a week that we absolutely love. She adores Graham and he adores her. It is such a blessing to have somebody that we feel comfortable caring for Graham. We still need more good nurses for nights and other days and the nursing agency is having difficult staffing us. This is a prayer point for us. To have competent compassionate nurses to care for Graham and all of his medical needs.

Books
Graham's biggest interest right now is books. He has learned to sign "books" and is constantly asking for "more books." He loves to sort them, stack them, read them, and point to them for us to name them. He flips through the books and points out similar animals or objects in different books. He has several books in the same series and he can find each one pictured on the back of the other books. He is one smart cookie if you ask me.

Moving
We are planning to close on our new house on July 20 and move on July 25. We are so excited! We can't wait to be in a one-story house. We are starting the packing now.

Twins
Ben and Hallie are 8 months old and they are sitting up on their own. They are rolling and pushing themselves backwards. It's only a matter of time before they are crawling. They are babbling and within days of each other Hallie starting saying "mama" and Ben started saying "dada." It is so sweet to hear them. Maybe it will rub off on big brother one day. Graham enjoys being around the twins. It is such a joy to see them altogether!

Graham's stick. The only thing he could put in his mouth until recently! 

ALL day long.

My babies sitting up!

Riding the train at the mall!

Finally got some pictures showing all of Graham's "hardware." (and his beautiful smile!)

EATING!!!

All my babies eating together! (And our favorite nurse, Amy, in the background.)

No ventilator!

New House! Can't wait to move.

Life at Home

Well Graham has been home a whole month! We are exhausted, busy, and stressed. But we are home, all together, and we are soaking up every minute of it.

Graham's health has been stable. His blood levels are doing fine. His respiratory status is stable even after being off his inhaled antibiotic for 2 weeks. This may be the longest he has been off an antibiotic since October. He is going to the pediatrician weekly for weight checks and check-ups. Graham is gaining about an ounce a day which is great! The more he grows the bigger and stronger his lungs will get. He lost weight last week which thankfully seems to have been a fluke because his weight was back up this week.

He is tolerating his feeds well (no vomiting or pain) so we have increased calories. He is now on Liquid Hope + avocado + coconut oil. We have weaned him off several meds and are hoping to come off more meds soon. He was on several meds for issues relating to his feeding difficulties but all that has been resolved since getting on Liquid Hope. But the doctors don't like to make too many changes at one time, so we are trying to be patient.

The most exciting news is that a Duke speech therapist gave approval for a swallow study. Graham will basically eat and drink substances with barium dye on them so we can see him swallow on xray and see whether or not he can safely swallow without aspirating. The trach in the neck can affect swallowing and his vocal cords are still recovering from being intubated so long last fall through his mouth. Currently the only thing Graham can have is a chew stick dipped in water. He seems to swallow the water fine (no coughing or gagging). We are hopeful he will be allowed to start taking things by mouth again soon. The soonest Duke can get him in for the study is June 30 but I plan to call some other places on Monday to get him in sooner.

Matt and I have left the house at the same time a few times when we have a good nurse and grandparents at home with Graham. We have also taken Graham out a few times (other than to the doctor) to Pullen Park twice, to church for the babies' dedication on Mother's Day, and to the library for toddler story time. We bought a sturdy swing and rigged it to hang the vent on it. It is so thrilling to see Graham get to do some normal little boy things.

Meanwhile, the twins are 7 months old! Hallie is rolling all over the place and Ben is almost sitting up on his own. They are eating three baby food meals a day. Hallie prefers the spoon to the bottle. Hallie is loud and constantly making noise and Ben has a quiet soft voice and pipes up when Hallie gets tired and quiets down. In general Hallie is intense and Ben is laid back. Its so fun to see their little personalities forming!

In other news, we are under contract for a new house! It is a one-story house in North Raleigh. Moving Graham and his equipment up and down the stairs is burdensome. He is napping in the pack n' play in the afternoon downstairs and so we all have to tip toe around. A one-story house would make life much easier! We are excited about the house but there has been a complication with the appraisal coming in way lower than selling price. We are hoping things will work out in our favor and we will still be able to get the house. We are getting a second appraisal this week.

That's most of the news lately. Here are some pics:

Not sure how Ben got Hallie's sock in his mouth!

They love their daddy!

Mother's Day

First time painting. He like it!

Whale rocker at the neighborhood park.

New swing! He LOVES it.

Graham wanted to get in the baby exersaucer. Ha!

Toddler story time at the library.

On the carousel at Pullen Park.

They let us ride twice in a row without having to get off.

And we rode the train! So thankful for handicap accessibility.

First time in the swing. 

Home sweet Home

Graham came home from the hospital on April 28, 6 months from his first admission last October. We are so thrilled and give God all the glory. This is such an answer to countless prayers! Graham came home in an ambulance to ensure a safe and uneventful trip. When we arrived our house was buzzing with nurses from the nursing agency, people from the DME (durable medical equipment, supplier of all medical equipment and supplies), and my parents and the twins.

We have 24/7 nursing for the first four weeks and then probably around 18hrs/day after that. This is a huge help. Matt and I are knowledgeable and capable of caring for Graham but he requires so much care that we need help in order to get everything done and eat and sleep and peek at the babies. The nurses measuring out all of his medicines is a blessing alone. Graham has been accepted into the CAP/C program which gives him Medicaid as a secondary insurance based on his medical needs and Medicaid covers the nursing! The idea of the CAP/C program is to provide support to families to care for a medically fragile child at home who otherwise would have to be institutionalized. So thank you tax paying friends for allowing us to function at home as a family!

Things have been ridiculously busy. We are trying to figure out daily routines and find a place to put all the equipment and supplies. We have a lot of different nurses to cover all the hours right now and so we are constantly orienting them and gauging their competencies. Eventually we will have more regular nurses who will be familiar with Graham and his care and that will allow Matt and I to relinquish a little more responsibility. Our parents are still helping out quite a bit and we still have the part-time nanny for the twins.

Graham is so happy to be home! His energy level and physical stamina have gone through the roof since coming home. He is pulling up and standing and attempting to walk. We are constantly untangling his lines and following him with the ventilator. We are going to be in trouble once he is walking again. He is enjoying interacting with the twins.

Thank you for all your prayers over the last several months! Please keep praying for Graham's health and recovery.

Graham's ride home. The last time he was in there he was on the way to Duke on ECMO.
Much more joyous occasion today!

He's home!

Enjoying toys he hasn't seen in a while.

First time in a bath tub since February! He loved it.

All our babies in one place!

First ever family walk! One double stroller for the twins and one for Graham and his gear.

I see you!

This is how he rolls.

Stroller info in case its relevant to you:
Its a Graco Ready2Grow which is similar to the Sit and Stand but I thought it seemed sturdier. We hang the ventilator on the handlebars. The suction machine sits on the bench seat. The pulse ox and "go bag" are in the basket. We had to move the oxygen to the back step because it was too heavy for the basket. The feeding pump attached to the stroller bag and the feeding bag hangs on a stroller hook. That's about it.

So close

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. 

Hospital Entertainment.

Insurance pays for the wipes.

Hey. If it gets a smile...

A boy and his cars.

Wearing green for our friend Eli who got a bone marrow transplant last week at Duke.

New favorite toy. Loves sticking his finger in his nose and in these balls.

Bath after a poop explosion. (suppository)

Bubbles for the win.

The trach doubles as a head rest. When he's too sedated to stay awake and too stubborn to lay down.

Getting a shampoo after an EEG left sticky goo in his hair.